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Silent Lucidity

Tonight, Jani is back inpatient at UCLA.

 

How many blogs have I written now that start that way? I don’t know. I don’t want to know.

 

She is back at UCLA tonight because I couldn’t get up fast enough this morning. I am the last line of defense against Jani’s psychosis.  Unless Jani is asleep, I have to be there. If I am not, Jani’s descent into psychosis will increase. I can’t stop it but I can slow it down. I do this by constantly engaging her, every minute that she is awake. There is no break for me. There can’t be.

 

Last night, it was my night to be with Bodhi, which are my “breaks” I suppose. Bodhi has needs to, but his needs are easier to meet. I can meet Bodhi’s needs simply by holding him. I cannot make Jani’s demons go away simply by holding her. I wish I could. I wish I could hold her and keep her illness at bay, but that is not enough. I have to distract her from things I can’t see but she can.

 

On Friday, we visited the local animal shelter. The officers and most of the volunteers there all know Jani. Some know of her story, some don’t. On Friday, there was a volunteer who knows Jani and has seen her story. She allowed Jani and me to help take care of the cats. I opened the cans of cat food and scooped it out. Jani chopped it up in the bowls using a spoon. She refilled the dry food and water bowls when asked. She did everything that was asked of her… for three hours.  Keep in mind that she can’t follow directions in school for five minutes. Yet here she was, totally engaged, totally present, doing everything that was asked of her. If me or the volunteer needed a towel, Jani got it. Jani helped change the kitty litter. She helped me build play boxes for the kittens. For the three hours it took to take care of all the cats, it was like her illness was non-existent.

 

If Jani could live at the animal shelter, she would be fine. Around animals, her hallucinations have absolutely no power over her, as long as she is performing a task. It is not enough for her to simply play with the animals. Even then, I see some roughness creeping in, a product of her illness. She will drop a kitten instead of putting it down. She will pet the cats like one would pet a large dog, her hand coming down too hard. But when asked to do a task to help the animals, all of that vanishes and she is totally focused and unhindered by her illness. She is gentle, kind, and engaged.

 

LA County also assigns juvenile offenders to community service in the animal shelters, and working for the animals has the same effect on them that it does on Jani.

 

Later that day, we stopped at a local Wendy’s so Jani could get her French fries and cheese sauce (pretty much the only thing she will eat now). On the way out, I spotted a rodent sticking its head up out of a hole. Watching, I realized it was a prairie dog, coming up to eat the roots of the surrounding grass. I told Jani to stay back, fearing that she would scare it back into its hole, but she couldn’t help herself. Of course, the prairie dog did disappear down his hole, but then reappeared and continued eating with Jani and me sitting only two feet away. Jani named him “Poppy” because he kept popping in and out of his hole. He popped up again and before I could stop her Jani stuck her hand in the hole. I started to tell her not to do this as it would scare Poppy deeper underground. I reached out to pull her arm back, only to see that Poppy was just inside his hole, sniffing at Jani’s fingers. I started to warn her that prairie dogs can bite. They have two sharp front teeth for biting off roots. But before I could say anything, Jani moved her hand up over Poppy’s head and patted him. And Poppy let her do it.

 

Apparently, if Cesar Milan is “The Dog Whisperer,” Jani is “The Prairie Dog Whisperer.” This was a wild animal, a rodent, letting Jani pet it. It was the most amazing thing I think I have ever seen.

 

She has a gift. One thing I have learned about mentally ill and autistic children is that they all do.

 

Again, Jani was totally focused and present with Poppy.

 

It was a good day.

 

But there were also plenty of signs that the psychosis was gaining strength. On Tuesday, Jani ran away from me. It was after school and we had just gotten back into the car. Jani spilled water on herself and lost it. She opend the car door (we were still parked) and ripped her shirt off. This has been occurring with increasing frequency. It happened in a Chuck-E-Cheese two weeks ago. She ripped off her shirt and dropped to the floor of next to the booth (thank God she didn’t spill on her pants). But she is nearly eight and reaching the age where being topless is not appropriate. My only goal was to get her shirt on long enough to get her to the relative privacy of the car, but I could not get her to put her shirt back on. So I took my own off, thereby violating the “No shirt, no shoes, no service” policy, but better I be topless than Jani. Thankfully a friend let Jani borrow her jacket or I would have had to leave without a shirt on.

 

When a crisis comes, I do what I have to do, even if that means literally giving the shirt off my back.

 

On Tuesday, when she ripped off her shirt, we were in the car, so I felt the best way to diffuse Jani’s rage was to let her keep her shirt off and I told her this. But psychosis doesn’t follow logic. Despite my telling her that it was okay for her to keep her shirt off, she started putting it back on, as if she was compelled to do so. Then she took off down the street. I gave chase, but she can run faster than me. I began to think I was going to have to call the police. I jumped back in the car and raced down the street until I was parallel with her and then jumped out again. She had stopped but when she saw me she started running again, right toward a busier street. Praying it would work, I stopped running and yelled for her to stop, telling her I wouldn’t chase her if she would just stop.

 

Some part of her logical mind was still functioning and she listened. She stopped. I was across the street from her, standing by the car. I didn’t dare approach her for fear she would start running again, and she was within a hundred feet of a busier cross street. She stayed put and I tried to talk her back, to no avail. Then suddenly Jani said she was hungry and it was all over. She said she wanted hushpuppies. I said we had to go to the store to get the mix. She crossed the street and got into the car as if nothing had happened.

 

The next day, I had to go into the store pharmacy to pick up her meds. She wanted to stay with Bodhi and Susan, who had pulled up alongside, but neither of us were comfortable with this. When Jani is impulsive, we try to keep her away from Bodhi. Last time they were in a car together, she realized he had one of her toys. She grabbed it from him and threw it at his head.  So I needed Jani to come into the store with me. She got out of the car, went to the rear, and lay down in the middle of the parking lot. No coaxing could get her to stand up and get back in the car. Sure, I could have possibly picked her up but I have learned that using physical force usually makes these situations worse. In these states, her psychosis has her completely under its control and if I use physical force, it will fight back.

 

I gently took her hands and tried to coax her up. Susan yelled that a car was coming, and it was, too fast. Instinctively, I turned my back to the car, putting myself between it and Jani. The space between lines of parked cars was too narrow for the car to swerve and the driver seemed to have no interest in stopping. At the last second, Jani got up and I moved her out of the way. Again, part of her logical mind was still present enough to trigger her self-preservation instinct.

 

So even I am not always able to hold her psychosis at bay, but I have more success than Susan does. So had I been able to get out of bed this morning, I might have been able to keep Jani going for another day. But the problem with having to constantly engage Jani every second that she is awake is that leaves me exhausted. As I have said before, I have a finite supply of energy. Her psychosis does not. It attacks her the moment she wakes up and I have to be there to talk to her, keep her distracted, acknowledge and respond to whatever she is saying about her hallucinations, keep them happy so they allow Jani to function.

 

And I wasn’t there this morning, so Jani slipped back, insisting that she was in Calalini. This has been increasing, too. Calalini has always existed for Jani, and she would say that she goes there, but could acknowledge in the moment that she was in Glendale or Burbank or Valencia. Now she can’t. Now she is in Calalini all the time. She insisted to Dr. Woodall in our last weekly visit that she was in Calalini right then and that she had arrived via “Great Dane.” She had no memory of riding down Interstate 5 in the car, even though normally she talks about the “Fives” around Interstate 5.

 

All of her impulsive acts are preceded about ten to fifteen minutes early by Jani looking up, her eyes focusing on something above and in front of her or off to her side. These are the “Nothings” as Jani calls them (so-called because for a long time Jani refused to tell me what she was seeing, screaming “Nothing!” when I asked her what she was seeing even though it was clear she could not take her eyes off something that I couldn’t see).  I only got her to admit their presence by making it a joke and saying “So they are Nothings, then. What do Nothings look like?”

 

Then she told me that they look like dogs, specifically Golden Retrievers. However, she cannot articulate how they can fly. They must fly, because she looks up at them, not down (which is what she does when interacting with 400, Wednesday, or any of the Number hallucinations). Jani can acknowledge that dogs don’t fly but can’t explain how these ones do. She also doesn’t “play” with these hallucinations. Rather, she looks up at them with a look of not-quite-but-almost fear, a concerned look, a look one might give to the sight of a snake slithering through your yard. You don’t panic, but you are sure as hell going to watch it and see where it goes, making sure it leaves.

 

Jani would not look at dogs this way. She doesn’t look at 400 the Cat or Wednesday the Rat like that.

 

Susan reminded me tonight that Jani once, when Susan grabbed her because she was walking into people at the mall as if they weren’t there, had told her “People look like dogs to me.”

 

Which means, I think, that the “Nothings” aren’t dogs at all, but human shaped. The numbers hallucinations are also ceasing to be just numbers and taking on anthropomorphic human shapes.

 

The hallucinations are evolving into their adult versions. Cats and dogs are becoming human shapes. And like most adult schizophrenics, she is both scared of them but afraid to lose them at the same time. Like the man raving to himself on a street corner, Jani is keeping her eye on them and trying to reason with them (which I have seen homeless schizophrenics actually do-have verbal altercations with their hallucinations).

 

The goal of the Thorazine and then the Haldol was to buy time until Jani got older and the Clozapine became more effective, but we clearly don’t have that much time. We have weeks, maybe months, before Jani becomes that person on the street raving to herself.

 

But before you email me and advise me to give up the meds and try “alternatives,” let me tell you what happens to Jani on no meds at all. Given how little her meds work against her psychosis, it is easy even for me to question whether they are worth it.

 

And then I saw what happens when she doesn’t get them.

 

Jani actually tells us when she needs her meds and what med she needs at that particular time. But once in the ER, inside UCLA, we cannot give her her meds anymore. Once she is admitted to the ER, only the hospital can administer meds (this is federal and state law). So Jani got her last dose at around 1pm when she was finally taken back into the ER (after repeatedly trying to run out of the hospital, Susan chasing her down while security stood around and watched). Once inside, she got no more meds.

 

When I arrived and replaced Susan at 2pm, Jani was pretty present. We played with her stuffed animals. She managed to hold on through first the ER doctor consult around 4:30 and finally the psych consult at around 5:30. But by six pm, I turned my back for a moment and she ran out of the room and into the ambulance area. Security simply pointed out that she had gone. I managed to catch up with Jani and grab her between to LA City ambulances parked outside. She was going under one of them, which was running. The response of the nurse to Jani? “You can’t do that, dear.” No shit, Sherlock. You would think that ER nurses would understand that a child trying to throw herself under an ambulance would not be capable of logically responding to a command not to do so.

 

By the time the psych doctor saw her, she was clearly losing her grip on reality. She showed the doctor a “Five,” insisted she was in Calalini (even telling the doctor how to spell it). Then came the dreaded looking up, which meant that the “Nothings” had arrived. It is not just a casual glance up. Jani lifts her eyes and cannot take them off whatever it is she is seeing. You have to call to her several times to get her attention, if you can get it at all. When you ask her a question, as the doctor did, Jani will look up, like a baseball pitcher waiting on a signal from the catcher, before she answers. It is like the Nothings tell her what to say. It is the only time Jani seems obviously not in control of herself (the running away looks like misbehaving). With the Nothings, she can’t even speak for herself anymore.

 

We got up to the unit around 8pm but even then she could not take her meds until her blood was drawn and the meds were authorized by the doctor on call and released by the pharmacy. By 8:30, I was reading to Jani. I heard her chewing on her blanket but didn’t think anything of it until Jani suddenly turned to me and asked me if any of her teeth were missing. Then I realized there was blood on the blanket. She had chewed on it until she drew blood. She told me “It’s no big deal. It’s okay” and resumed chewing. Desperate to stop her, I asked her if she was hungry. She said she was so I had the nurse bring toast and butter, which Jani wolfed down. Then the chewing resumed. She was hungry but was so out of touch that she could not ask for food, only chew on her blanket until her mouth bled. Normally, she melts down at the slightest scratch, but this time told me that her bleeding was “no big deal.”

 

Finally, she got her Thorazine, nine hours after her last dose and started to calm down. She let the blanket out of her mouth.

 

It told me all I needed to know. Yes, her medications don’t do everything we would like them to do. Yes, they don’t entirely eliminate her psychosis or her hallucinations. But without them, even for a few hours, she begins to hurt herself and is oblivious. The psychosis takes over completely.

 

Without medication, I have no doubt anymore that Jani would be dead within days, if not hours. She would continue to hurt herself until she gave herself a fatal wound. Yes, on the meds she doesn’t function very well, but without them she doesn’t function at all. Without them, she becomes non-responsive, gradually entering not a violent state but a catatonic one. Without meds, Calalini totally dominates her existence.

 

Unfortunately, the flip side of that is that the Jani on meds may be the best we are going to get, only mildly able to function and still at the mercy of sudden bursts of psychosis.

 

I am sure that tomorrow morning Blue Shield will already be pushing for her release. I am sure the Nothings are smart enough to hide themselves from the doctor so Jani will soon appear to be fine again, free from the stressors of our world while she is in the hospital. I am sure she will be released after a week and come home and we will start the whole cycle all over again. I am sure that residential will be brought up again as our only option.

 

But I will tell you this: she will go to residential over my dead body.

 

I am the only thing holding Calalini back, and I work my ass off to keep Jani in our world. If she goes to residential, who is going to do everything that I do, everything that is necessary to keep Jani in our world?

 

You know that Jani asks us now to tell the doctors what she is experiencing? She will tell them if she is pressed by us, but she does so with a great sigh, because she knows that they probably won’t believe her. She has already learned that doctors won’t listen to her, won’t take what she sees and feels seriously. She has already learned that as a child, what she says is dismissed.

 

She is giving up.

 

That is why I won’t let her go to residential. Because I do what I have to do to keep her from giving up. She is my child. She is just a patient to them. What reason do they give her to live?

 

I give her the shelter, I give her Poppy, I give her the knowledge that I will never give up on her.

 

What do they have?

 

I don’t mind Jani going to Calalini, as long as it is a round trip, not a one-way ticket.

 

My only comfort is I was there as she fell asleep.

 

In silent lucidity.

 

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46 comments on “Silent Lucidity

  1. Jani
    Mostly heartwrenching, but at least she enjoyed the experience at the animal shelter. Hopefully she’ll be able to have more such visits. Perhaps being involved in the care of animals might be a sort of (limited) salvation for her.

    Note from Michael: We go every few days but it’s not enough for her. She needs to be working there everyday.

  2. I can think of nothing useful to say, but I can’t bear the idea of being a silent voyeur of something so obviously and acutely painful. Your anguish is so large, it sinks right into my guts.

    For what little it’s worth, know that I am here, sending love and prayers and hope in your direction.

  3. Sad
    I can’t even imagine what your families life is like. At times, I think…”thank goodness they have their daughter” but.. do you really have her? That is terrible. I pray for your family. I pray you get the rest you need, and the support.

    Note from Michael: We are grateful for what we have of her.

  4. Great father…
    Hi Michael,
    I just read your silent lucidity, I am so happy that Jani has a father whom loves her to death!! You are a blessing for her, and everyone knows it. Keep your faith high, pray for her health and it will be gone for ever! I will pray for Jani and for you! Thanks for sharing your story with us…
    Nettie:)

  5. Michael,
    You are a blessing to Jani…keep up your faith for her to be cured. Keep praying daily, don’t stop, and I promise she will get better. Thank God for she has you! Good luck.
    Nettie

  6. I am so sorry to hear that Jani is back in the hospital… I wish there was something that they could do for her… it seems so unfair that a little child has to contend with such demons… I pray for you and your entire family.

  7. This post made me cry. The love you have for your daughter should be a lesson to all parents. As an adult in the mental health system, I understand them not believing what they are being told. Them taking me off meds and all the while me telling them I’m going to hurt myself.Not because I want to because I can’t help it and normally have no memory of doing so.

    I hope Jani’s recovery is quick and you get her back soon. I hope her meds start helping. But most of all I hope for you that you may have the strength to keep her “here” because “there” is so scary.

    Note from Michael: Thank you, Heather.

  8. Michael,
    I was so saddened to read that Jani is back at UCLA because her psychosis has taken over, once again. I hope you know what an amazing father you are. You are willing to do anything to save Jani, and there are not many people in this world that would truly sacrifice everything for their children. They say that they will, but, in reality, will not. I have just contacted Cindy to volunteer with the Jani Foundation and hope that I can help, in some tiny way, to make a world in which our mentally ill children can truly receive the help that they need. My thoughts and prayers are with you and your family.

  9. I know the exhaustion you and Susan must feel. My daughter has schizophrenia too. It is so hard on an every minute basis. You cant leave them alone even for a second. Leaving you with nothing but mental and physical exhaustion. The only thing that can get you through is God’s grace. I do pray for all of you often, including Bodhi. I have a 12 year old daughter and it is so hard on her. It is such a struggle to try to meet everyone’s needs. I admire all of you for going public with Jani. Thank you from the bottom of my heart for doing this. I can not tell you how much it means to our family, just knowing that you are not alone. NO one understands the importance of medication and the horrible effects our children have without it. My daughter can not even function at all without her meds. God bless each and every one of you. Remember the little moments of because they are few and far between. Kim Perry

    Note from Michael: Thank you, Kim, and please consider joining our private online support group for parents with children with mental illness. You will find out that you most certainly are NOT alone. Here is the link to join: http://health.groups.yahoo.com/group/parental-support/

  10. Back before I began medication, one of my main hallucinations/delusions at the time (I never saw her, only heard the thoughts she put in my head, mumbling in the other room, messages on TV/radio/etc, and the commands she used to place in my head), an elderly ghost, wanted to drag my soul into her Hell of a world, which was somewhere between Earth and Heaven. In revenge against people for killing her husband in a car wreck, she wanted to drag people into this world, where there was literally no feeling, expression, color, hope, dream, and emotion other than misery. To do this, she sent spirits back from her world in bodies to spy, and could see and/or me at all times through screens, lights, radios, the eyes of those close to me, animals, and any reflective surface. This all provided her access into our world. She would use that door to try to drag me into her Hell, making me feel numb, unable to experience joy, and express any emotion, other than random laughing fits that were fueled by nothing, and sounded rather creepy. The most she ever came to getting me into her world was when I would be unable to move my body, my should so much in her world was catatonic. But there were layers, a type of spiritual wall, that were in her way from completely dragging me into this world of hers. Having a conversation with her through thoughts she would insert, as I was not in her world enough to actually hear her speak, she would command me to hurt myself, or my family would get hurt. As, the more damage that was done to my body, the closer I was to death on the “life scale”, therefore making my body, my armor, weaker and my soul more detached from body, thus easier to take. Luckily, I was never actually hit by a car or jumped off a building; but I was willing to do anything to please and keep her from family. I could cut myself until my arms with blood, bang my head or kick and punch the wall until there were bruises, chewed on rough objects, and would even partially suffocate myself (wait until I felt dizzy, then release), yet I wouldn’t stop, and would barely notice the pain, almost oblivious to it. I had to do what she said, or she would kill my family or punish me by putting demons on to me and physically attacking me, all of which I felt. Her and I (mainly, her) were starting to make plans for more severe injuries, ones that would allow me to see her, hear her, and for her to gain access to our kitchen knives, so she could use them against others and me if I misbehaved. The dates for jumping in front of cars, jumping off buildings, slashing my throat, and overdosing were set when I finally told somebody about all of this – regretting it soon after because it made her angry – and being hospitalized. Few times during this was I scared about the damage of the injuries. I was just terrified of her and what she could do.

    So when I read this post, I got it. While not exactly, I knew what it was like to stuck in that other world, waiting for the creature in control of you to tell you what to say, and doing anything you can to stop the pain and quiet the screaming and commanding in your head, even when it begins to physically hurt or injure you. Physical pain can never beat what the psychosis cause, a beast disguised under costumes of cute animals or sadistic ghosts. But what makes more angry than most anything else, is that I am now functioning OK with while on medication, and that ghost is too many layers away because of the drugs that even injury won’t bring her back, yet others have not. Jani, Brenna especially, I get. I understand what they’re going through, and I wish I could meet, spend time and become friends with both of them; but I can’t even do that, never mind make the psychosis goes away. Why am I so lucky? For all the pain I cause other people, I certainly don’t deserve it.

    I hope today was a good day for Jani and you, even if she is admitted to the hospital. Of course, I hope tomorrow is too and that this hospitalization does some good, even if just a little; but I know when I was psychotic, it was hard to deal with thinking ahead more than a hour. So I hope she is doing OK right now, and that she finds some happiness in the moment, so that it fuels her to hold on until the next one.

    Eri

    Note from Michael: Thank you for sharing, Eri. It is important that people understand what you, Jani, and Brenna live with. Today was a good day, for the most part. It is like you said: trying to create moments of happiness.

  11. I had to cut this out of my last post because it was too long:

    I know it won’t fix anything; but know that I’m supporting and loving Jani from afar. There are people that care, that understand, both what you and your daughter and going through. I certainly get, even if not completely, a lot of what Jani does and feels. The psychotic actions don’t make sense; but I completely understand why they make sense to her, and in a lot of ways, the illogical logic she has for doing all those things makes sense to me, too. If that makes any sense. Please also know that I am ever in the area, I would love to play and engage her! Not out of pity; but because I would be able to comprehend why she behaves certain ways, says hurtful things, be patient, and I have no hesitation charging into her world and taking it all seriously; because it is real, just not to us. And also because she seems like an awesome girl. Why wouldn’t I want to spend time with her?

    I was wondering if you would mind me creating two picture books for Jani, one about how it feels to live with psychosis and be a child, and also a little story book about Calalini, introducing some its residents and things they do. Sadly, they won’t be publishing company made and won’t have professional quality artwork; but I thought it might make her happy to feel understood and be able to have a book all about her world. If we go through with this and she likes them, I can always make more using similar themes – what she sees and hears. If you think it’s a good idea, maybe you could give me an e-mail with some information you have on Calalini and a picture some of her drawings of them? I understand that if you actually like the idea, it might take you a long to e-mail. I promise, that is far from a problem, you can take as long as you need.

    Note from Michael: You would be welcome anytime, Eri. The picture books sound like a wonderful idea. Give me some time.

  12. I came across Jani’s story recently and have been following ever since. She is always on my heart. Sorry to hear that she is back in the hospital, but I’m sure it was necessary because you two seem to do all you can to keep her out of inpatient care. I have been through two bouts of severe depression in the past, one requiring hospitalization. I have recovered, but I do remember, even as an adult patient, that the doctors just do not listen to you when you tell them how you are feeling. They don’t seem to believe what you’re saying. It’s extremely frustrating I know. I’m sorry ya’ll are having to deal with that in addition to Jani’s illness. Keeping your family in my thoughts and prayers…

    Note from Michael: Thank you. Right now they seem to be listening to us and are treating her illness more like they would an adult than a child. We will see. Her latest inpatient doctor seems like a good guy. He seems to really listen and I get the feeling, after all this time, that UCLA is willing to do whatever we would like. Unfortunately, that means we have to make the decisions and live with them, which is not easy either.

  13. mother
    I understand the exhaustion. I understand the unwavering commitment.
    Your heroic efforts are the truest form of love.
    I have often said that I study my son. You and Susan do the same with Jani. We are always paying attention to all the details. Studying is very different than parenting. With that constant engagement comes the exhaustion. The degree of work required to keep interacting with your daughter is so hard to define. Most could not give to the extent you do. You have incredible endurance and resolve. I keep thinking you are LOVE personified!
    I hope the many messages you receive give you comfort.
    You are an extraordinary person doing extraordinary work.
    Let us know what we can do to help you.

    Note from Michael: They do, Karen, thank you. If you are interested in helping, we are setting up the Jani Foundation right now and are always looking for volunteers. Here is the link to our Facebook page (website coming soon): http://www.facebook.com/janifoundation

  14. Another beautiful post, Michael, but this one with a touch of almost divine beauty, unlike many of your others, which feel more desolate.

    Jani does indeed appear to have a gift for animals. You mention that she goes there every few days. Do you think there is any possibility that they will allow Jani to go more frequently, maybe like an internship of sorts? Perhaps trying something like that would not only keep her engaged in the common world, but also allow her the chance to have an education she’s engaged in.

    And yes, I’m going to be hopeful here – maybe that can kickstart her into finding a direction for when she’s a grown-up.

    I’m just throwing stuff out there, only you know all the factors involved. But I was so touched by her moment with Poppy. And maybe that’s where she’s meant to be.

    I am sorry Jani is away for those who love her so desperately much tonight. Be well, Michael.

    Note from Michael: Unfortunately, the County shelters don’t allow volunteers under the age of 16 (for liability reasons) but one of the priorities of the Jani Foundation is to create day school and part of the curriculum/therapy will be animals. It will be a school with a built in animal rescue! Right now we are still working on getting our website up but here is our Facebook page link: http://www.facebook.com/janifoundation

  15. -hugs- Try not to blame yourself. You’re doing absolutely everything you can for Jani, but you need respite sometimes, too.

  16. Jani…
    Hi! Hope you are doing better than most days sweety!! My name is Nettie, I too have a mental desease and have to take medication for the rest of my life to be able to live day by day. I just wanted to let you know, you are NOT alone, I will always be supporting you from afar, and I will remain wishing and praying that one day, soon, you will also beat this awful illness. You have to be strong, honey, I have been there, it will go and it’s very scary, and some times you feel no one cares, but we do, and hopefully one day you will be healthy enough to look back and say the same these same words that I’m saying to you, to some one who will need to hear the same words of encouragement! Thanks for listening Jani, hang in there! God Bless you, your daddy, mommy and Bodhi!
    Nettie

  17. Michael, have you all tried having fish, hermit crabs, and/or hampsters for Janni? I know of one child who had the hampster tubes throughout their house…

    Best wishes always.

    Note from Michael: Hamsters Susan is allergic to but we have converted the balcony of Jani’s apartment (and Bodhi’s as well) into a “sand park” by dumping about 200 lbs of sand on each balcony. I have thought about turning Jani’s balcony, which is enclosed, into a hermit crab habitat during the summer. All I would have to do, other than providing food and water, is close off the rainwater runoffs. In the winter we would bring them into a terranium. Jani’s therapist went out and bought two Beta fish for her office because none of her toys were engaging Jani and it has worked, so I wouldn’t want to weaken her excitement to see those fish by buying our own fish. I am trying to insert animals into as many places in Jani’s life as I can.

  18. I knew it was coming……unfortunately….I’m very sad but not surprised that Jani is back in the hospital. Eri, I really hope you do make those picture books for Jani…..sounds like a brilliant idea….

    I might have a name for the Nothings….and even a reason why she calls them that. In Calalini, YOU, her father, see nothing from there because it’s not “real.” So Calalini is a world of nothing for those of us who are not Jani…..the nothings could be “Gatekeepers of Calalini”…..

    This is gonna sound really weird but……well maybe not. I’m autistic and I have a very vivid imagination. I could create part of Calalini for myself if I knew more about the residents and how they interact…..but I would be creating it….complete with sound, picture, everything. I have a friend with schizophrenia and even before I knew he had it….I had created a human image for the disorder……a beautiful woman who is as psychotic as she is beautiful and she wants to torture people. I imagined being one of her “servants….” (by that I mean unaffected person who knew someone who was affected…..it meant taking the affected person to her. This was all in my head….created out of severe anxiety…when I’m anxious my imagination becomes quite dark….) and I would be driving on the Manic Depressive Highway (again, not real, I created all of this….) and then take the exit for Schizophrenia Forest (that’s what my mind created it as)……

    so I think maybe the Nothings are beckoning her “back home to Calalini” (maybe she thinks they believe she belongs there…..but you and I know she doesn’t)

    I don’t believe she always thinks that is her home…..I don’t know whether she thinks so at all…..but she might be looking up so intently because of their siren song calling her back to Calalini…..

    That’s all for now. I really hope that she gets out soon and please don’t take all what I say about my imagination and my image of schizophrenia the wrong way……I am aware that it’s totally my imagination…..

    When I watched the film “A Beautiful Mind” and saw the inner world of John Nash I thought hey…..I can relate to this guy in a way…..but I know that mine is imaginary….and he didn’t.

    I’m not sure what stage you’re at in having the Jani Foundation go incorporated but if you need help…..check out this site
    http://www.501c3.org

    take care

    Athena

  19. You are both doing a great job!
    Keep fighting for Jani, you are all she has as I totally agree with your perspective of how the doctors/hospitals look at our mentally ill children, they have no idea what we go through each and every day. I read and follow your blogs, please keep us up to date, we really do care and want to know how you and your family are. ~Hugs, Kerri

  20. Keep fighting for Jani!, you are all she has. I totally agree with what the doctors and hospitals do as far as lack of care and just another patient. Keep up the presure!

  21. I have been reading your blog for a while and am in awe of your and Susan’s strength. Reading it reminds me of a story I read, which I am sure you know it, “The Ones Who Walk Away from Omelas”, if not there is a copy at the link http://harelbarzilai.org/words/omelas.txt People often view the little girl in the story as metaphor for mental illness in our country. It reminds me of your struggle with the breaking the stereotypes with mental illness. I just want you to know that we (people who care about your family) are with as you walk away from Omelas.

  22. Thinking of you
    I saw the show and then google about Jani…I found this your blog and some other videos about Jani’s life from 20/20
    I’m deeply touched! (I’m sorry my English is not good,is not my mother tongue)
    I do know the pain of having a child with a lifetime health condition and to want to be the one sick instead.
    I’m so sorry for your pain. I wish I could help you and Jani.
    I just want you to know I care and I’m thinking of you. I wish things get better for all of you very soon.
    Keep strong
    warm hugs
    Sophie

  23. the farm
    jani’s story is heartbreaking. you and your wife, courageous and strong.

    when i read abt jani’s actions and response to working at the animal shelter, i thought what if everyday of her life could be like that, filled with work she obviously enjoys and surrounded by animals…big animals who won’t be hurt if jani pets them too strongly…i don’t know anything abt your financial and job circumstances…but can you move your family to a working farm…not one where you are responsible for the entire running of the farm but to a place where jani is not so constrained by the quorums of urban life “no shirts and shoes rule”…..a place where she is free to run when she needs to, place where there is work for her to do that engages her and gives her purpose and finally a place where she is surrounded by animals….beings that obviously bring her calmness and tranquility.

    maybe this all too crazy and off the wall…but it just immediately popped into my mind when i read abt jani at the animal shelter.

    good luck
    peace be with you all
    bob marley was a modern day prophet…bringing forth a message in his music that is timeless.

    lisa

    aerosmith’s the farm: (a little wild…but the words and message i find interesting)
    Get me to the farm
    Get me to the farm
    Get me to the farm
    Somebody get me to the farm

    I got terminal uniqueness
    I’m an egocentric man (child)
    I get caught up in my freakness
    But I ain’t no Peter Pan
    Get me to the farm

    Get me to the farm
    Get me to the farm
    Get me to the farm
    Get me…

    Buckle up straightjack
    Insanity is such a drag
    Jellybean thorazene
    Transcendental jet lag
    Sanity I ain’t gona
    Feeling like a piñata
    Sucker punch, blow lunch
    Motherload, pigeonhole
    I’m feeling like I’m gonna explode

    Yeah, I wanna shave my head and
    I wanna be a Hare Krishna
    Tattoo a dot right on my head
    Heh, heh
    And the prozac is my fixer
    I am the living dead

    (Follow the yellow brick road…
    follow the yellow brick road…)

    Take me to the farm
    Take me to the farm
    Somebody get me to the farm
    Somebody take me to the farm

    Note from Michael: I would love to be able to move to a more rural environment but a) I don’t have the financial means and b) the suburbs of Valencia is all Jani has really ever known. I don’t know if I want to take her away from everything she has known. What we would like to do is set up a day school for kids with mental illness with an attached animal shelter so Jani and kids like her could work with animals everyday. Of course, that takes money, too.

  24. Best wishes
    Dear Michael,
    This blog is an absolute testament for the love you have for your daughter. My sister has suffered from mental illness for most of her life. As a teenager, she was completely subject to her disease. She had to leave school eventually. However, she is in her twenties now and stable. Have there been set backs? Yes. Has she made choices while psychotic she would not have made otherwise? Certainly. BUT, 75% of the time she is a happy, functioning adult whose problems resemble the problems of those of us without mental illness. She holds down a job. She is slowly working towards a journalism degree. I tell you all this, because I know how hopeless mental illness can make the world seem. Please don’t ever stop believeing that Jani can have a happy, healthy life.
    Best,
    Katie

    Note from Michael: Thank you. I do believe Jani can have a happy, healthy life. I just don’t know how “normal” it will be in the traditional sense but as long as she is happy I don’t care whether she goes to college or holds down a job.

  25. Hope
    I hope that Blue Shield don’t push Jani out too soon this time, and that you can make some progress in fighting those Nothings.

    Sorry to hear things have gotten rougher for you – I hope the next post brings some better news.

  26. hey michael
    im so sorry for you and your family. its not a life we all live and i have alot of compassion especially for Jani. Im praying for Jani and i just want to say ‘ please dont dismiss the idea that God can set Jani free’ I am going to get more people to pray for her and i realy hope that Jani’s life can be lived more in reality. for her to love her brother without voices telling her to hurt him, to not hear the voices at all, i believe this can happen. have you heaRD of Curry Blake, he is a great man of faith that preaches truth, healing and freedom in Jesus Christ our saviour, i will ask him and one of his teams to pray for Jani, not just once but until we see something change for you! there are many miricles recorded and many more to come. God bless. amanda mbah-Perth western australia

    Note from Michael: I don’t dismiss God at all. I just believe, as I have said many times, that God sends people to do his/her/its work. I don’t believe that you can just wave a magic wand and make things better (which is why I don’t believe in faith healers and would never advocate people going to them). There is nothing wrong with prayer. I welcome prayers. But God expects us to work to make our prayers a reality, not wait for him to do all the work. God is inside us, not some external force. God works in the hearts of humanity. Every kind, compassionate, and good act ever done by a human in human history comes from us listening to God inside our hearts. So I welcome prayer, but I tell people to not just pray, but to take action and support mental health needs.

  27. The Nothings
    I think that Jani refers to them as Nothings because that is exactly what you would see if you looked at where she was looking. You would see nothing. She knows that you can’t see them. They are probably the gatekeepers or whatever…..of Calalini……telling her to come back to them.

    Katie- I’m glad to hear your sister is doing better.

    Where did Jani come up with the name “Calalini” for her world?

    Athena

    Note from Michael: She came up with it after I told her about Catalina Island of the coast of Southern California.

  28. I am an adult neurologist in the Boston area. I saw your story today on Oprah, and read a bit about your family. I hope you know what amazing parents you and Susan have been to Jani. The neurological and psychiatric disorders both in children and adults can be devastating to patients and to their families. As you so eloquently stated, although there is a greater understanding of the neurochemical changes that underlie schizophrenia and other psychoses, we are still a world away from being able to fully treat many of our patients, and even consider using the word “cure”. I am assuming that Jani has had a full neurological evaluation, including MRI, consideration of PET scanning, EEG long-term monitoring etc, even though her expert specialists have made a diagnosis of childhood schizophrenia. By sharing Jani’s story with others, you are providing a much needed support for many other patients and their families. As with many other disabling chronic disorders, I am hopeful that with research and a more full understanding, beautiful people like Jani will be able to lead a more normal healthier life.

    Note from Michael: She has had an MRI, but no recurrent EEG or PET scans, largely because insurance won’t pay. Blue Shield denied payment for the MRI and UCLA ate the charge. Sadly, due to pressures from insurance companies, who are true dictators of mental health care in America, the research you are talking about, although badly needed, is very limited. We tried almost a year ago to get Jani into the only study on childhood schizophrenia, at the NIMH, but she was disqualified because the MRI revealed an ischemic thalamus which constitutes a brain injury.

  29. Speechless
    That’s what I am when I think about Jani and you and your family. I just wanted to say that I am blown away by your dedication to Jani and how hard you fight to keep her alive and well. You’ve probably heard this to death, but my heart just hurts for you all. I hope to the Nth degree that Jani doesn’t give up. Keep fighting.

  30. Bless you
    Hi folks,
    I do want to say bless you guys for keeping so vigilant on Jani’s condition. I watched the Oprah show today (6/17/10) and read about you folks in the L.A. Times, and saw the Discovery show on Jani. I do hope Jani can get some peace as she grows, as well as her best friend.
    I worked with a kid at my last job who deals with schizophrenia and we talked about what he would go through. I have also read some things on this, and it is very interesting, to say the least.
    I will be watching and looking in print and shows as to how you folks are doing, and Jani. Please give her a hug from us all.

    samantha

  31. Learning
    I really appreciate your blog. I have been teaching 5th and 6th grade for two years now, and I am moving up to 8th grade this year. Every year the students are different, and every year I realized that I don’t know half of what is going on in some of the minds of my students. In my district your daughter would be in a social development class, but there are many others who are able to function well enough that they are placed in mainstream classes like mine. I am learning so much from you and your wife. My goal as a teacher is to help all of my students reach their fullest potential, and the means in which I do this varies based on the student’s needs, passions, triggers, and expectations. Please, keep sharing your story, so the rest of us can learn from your family and be able to build a better understanding of the mentally ill.

    Note from Michael: Thank you, Amy. Teachers like you are very much on the front lines of this and it means a lot that you are so open to learning how to educate mentally ill students. We are working on setting up The Jani Foundation and our first goal will be provide consulting and education to teachers on ways to help mentally ill students within the classroom.

  32. Sending lots of positive thoughts your way…
    Your post brought tears to my eyes. You are an amazing father and your beautiful daughter is so blessed to have someone as strong as you in her life. How is Jani doing now? Has she left the hospital?

    Note from Michael: No, she is still there. I will write another blog tonight to update everyone.

  33. I just saw ur appearance on Oprah which re-aired today. I had to find you online and follow your story. My heart goes out to you and to sweet Jani. I wish I could help in some way. I hav 4 children and at times, I don’t think I can handle it. Your story is such an inspiration. I will keep ur family in my prayers and I look forward to following your story. Keep up your fight Michael and Susan. I can do all things through Christ who strengthens me.

  34. Helping children like Jani is my calling.
    Dear Michael, Susan, Jani and Bodhi,
    My name is Deanna Clark. About 5 years ago at the age of 21 I got a part-time job as an instructional assistant at a school for children with special needs. On my first day I met 7-year-old Liviu. Liviu was born in A Romanian Orphanage…where he spent the first 3 years of his life with no love or affection. He was nonverbal, violent, anti-social and the biggest love of my life. I have no idea what I did, but on that first day he spoke to me and I understood. “Pink and Flat Kitty” is what he said. The teacher demanded that I become his 1 on 1 aide…so I did. 2 years later…He was off many of the meds, was socializing with other kids, stopped hitting and biting, and was even able to attend a normal elementary school (although stayed in the special needs class.) I don’t take credit for this transformation, but I do believe I assisted in it. I knew right away that this was my calling…to assist children (and adults) with special needs to live the most fullfilling life they could possibly have. This is very close to home for me, because my grandfather spent his last years in an institution after living with paranoid schizophrenia for 40 years (beginning in his twenties.)I loved him so much, despite never feeling that love in return. I am sinply sending you this message to tell you that I support you. All of you…Michael, Susan, Jani and Bohdi. I will continue to support your cause by getting my degree in Behavorial Therapy and helping families like you with the best of my ability. I have so much unconditional love to give to you and to families in similar situations. I have very little money (especially since I’m getting married in 4 weeks,) but I will send you whatever I can. I will ask my family and friends to donate to Jani’s Journey as a wedding gift to us. You need it more than us. God Bless you!

    Note from Michael: What you are committed to doing is more important than money. We would love it if you would consider volunteering for The Jani Foundation. We are still in the set-up phase but you can find more information by going to my “Resources” page and clicking the link for The Jani Foundation (which is just a Facebook page right now).

  35. Music?
    Michael, is there any kind of music that helps (or hinders) Jani’s mental state?

    Note from Michael: Nothing that produces really dramatic results but she enjoys music and needs to listen to her children’s CDs in the car. She also has written a few songs with help from the music therapist at UCLA.

  36. Hey Micheal. I saw the episode about Jani on Oprah today. It really touched me. I too have a psychotic disorder. Mine is called Schizo Affective Disorder. I am very sorry to read that Jani is back in UCLA. As a child when I would go into the hospital the look on my parents faces were one of utter fear and sadness. I completely understand when you say that they don’t have the means to keep Jani in this world. If it wasn’t for my parents I wouldn’t be in this world either. I would be in my “alternate reality” which is what I called it. The only way to get there was to take my life and because noone could see the others that I saw that meant that they were not physical beings but spiritual. (that is what I believed) If it wasn’t for the medications that I am currently on (and my parents who fought to get me out of the state hospital) I would be in the present world. Of course, not all of the symptoms are alleviated when I take the medication, but atleast I can have a conversation with someone without “amelia” popping up. No one can understand what Schizophrenia does to a person and the family unless they have or someone they know and love has had it. I commend you Micheal for fighting to stay a part of her life. I cannot say enough how vital it is for you and your wife and bohdi to be a part of it, because with out you guys, she will not have love, affection, support, understanding, and protection that she needs. Never give up on her. (I highly doubt you ever would) I am living proof, that loving parents can take a child who lived in “another world” and bring her back to reality, even when everyone says there’s not hope and just give up on her. (I was 12 when I started showing symptoms)

    Note from Michael: Thank you for sharing, Stephanie. No, we will never give up. We can’t. She’s our little girl. On my resources page of my website, I have a link to an online support group for adults with mental illness that I set up. It isn’t terribly active because I don’t have the time to moderate and keep the group going. If you would be interested, feel free to send me an email.

  37. Any other aspect of Catalina
    I know absolutely nothing about Catalina Island……are there any other aspects of it that fit with Calalini?

    I mean…..anything to do with certain numbers like 24 (hours), 100 and 200 (degrees), 400 (the cat), 5, any other number?

    take care

    ps. not that you have anything to do with this Michael but the first part of the security image was “dx” which is a differential operator…..I’m a math major so that is of particular interest to me. I was telling your wife that I feel like Jani could be a mathematician someday because of the numbers……she must have a particular interest in numbers since she interacts with them a lot in Calalini,,,,,

  38. Wow. I figured…okay…I’ll read this post and not comment at all. Not so much. I plan on going through old posts…so please do tell me if my posting is a nuisance…I would understand completely – you and your wife are busy.

    Okay – so the point of my post. You have stated that if Jani is engaged in work that is related to helping the animals…she is happy…focused…present. I have a question. Do you think that the animals must be present in order for her to be so involved? Where I work, we take work in for our students (who are at an age where they need job training). One of our jobs, that is a big hit, is a pet food job. They work in an assembly fashion and fill sample bags of food, label them, and seal them – for a local pet food guy. I find that when they do work that is meaningful (rather than rote learning type stuff) – they do much better. School learning doesn’t always have a connection with immediate purpose. Would Jani benefit from productive work that is associated with an interest? Jani loves animals…so she might like a pet food job (but another kid might love computers…so data entry might be his or her bright spot). I guess my point is – can you bring the shelter home (in a way)? Can Jani prepackage food for the animals? Would she be interested in making treats for dogs (my Lola Jean just loves homemade puppy cookies)? Someone has made up “Jani bags” and I LOVE that idea. Can Jani make up “doggy bags”…for homeless doggies? We also make cat-nip toys. I bet the possibilities are endless. It just strikes me that she is interested in helping…where it really counts. Haha…maybe she takes after mom and dad :D.

    Note from Michael: We very much think alike. I believe in tailoring education to meet the interests of the child, regardless of whether the child has a mental illness or not. It just makes sense, so yes, I am thinking along those lines. Thanks for the great ideas.

  39. Only Jesus Christ can help you
    It is apparent Jani is being oppressed by evil spirits. There is absolutely no doubt in my mind the cause of her troubles are evil spirits. Some of the things Jani has tried to do (from what I gathered from the videos) such as suicide and kill others are from evil spirits. No child would ever think of such a thing unless because of evil spirits.

    All of her troubles can easily end by praying over in the name of Jesus Christ. Every day Jani is losing her childhood because of the evil spirits when they could be simply be rebuked in the name of Jesus Christ.

    It almost angers me that the parents don’t turn to God. Wasn’t it God who created everything? I mean, they spend all this money and time turning to doctors and the media when they could turned to the King of Kings Jesus Christ. It reads “All authority has been given to Me in heaven and on earth. (Matthew 28:18) The mere mention of name Jesus Christ makes evil spirits shudder.

    Note from Michael: God expects us do His work. Praying alone won’t make anything better. I wish it was true “that no child would think of these things” but unfortunately that’s what mental illness does. You call it demons. I call it schizophrenia. It’s really the same thing.

  40. Possible future employment for Jani (and a possible lucrative past time for now)
    For many years I ran an import business. I imported exotic fish and doodads for fish tanks, the latter being the real money. This progressed to owning my own fish retail store with a spawning facility. I would spawn feeder fish for constant revenue and rented out tanks where customer could spawn their own exotics for a cut of the profit from the sale of the spawn. As you likely know, due to your turtle care, the water matrix that can encourage a certain species to spawn can make another species ill or even kill them. The cost of setting up a tank for a species, that would otherwise inhabit a tank with many other species, can eat up the profits before the fry even arrive.
    You live in a state with a thriving fish tank industry. What about setting up some sort of spawning facility as part of Jani’s occupational therapy? She enjoys it, it could help pay for her care and as I’d imagine that she’ll shortly be getting to the age where a few extras and a bit of pocket money can be important to a kid’s sense of self worth she’d have part time employment that you know she’d be able to do. Her love of animals seems unaffected by any of her concerns making it unlikely for her to sabotage to process.
    It costs nothing to find a wholesale ditributor and throw together a website. I started my business with a fax machine and a used 1978 GMC panel van. Once you figure out the distribution chain and get a few customers the rest falls into place pretty easily with that revenue coming in.
    Jani’s exceptionally gifted and is capable of many things but it seems as though she thrives around animals.
    I forget where I heard this, originally, but I’ve always remembered it:
    Give a man something to believe in,
    If you can’t give him something to believe in give him something to love,
    If you can’t give him something to love just give him something to fucking do.
    Jani likes tasks, she likes precision, she likes routine, she likes the predictable. She wants to be a vet, like most kids, because she wants to care for animals. The reality is that the job that vets do most often, and my husband can attest to this, is euthanize animals. My husband was much happier puttering around our shop and tanks, and taking on the odd wilderness study, than he was when his work consisted of repeatedly explaining to heartbroken owners how the chemical process worked to put their beloved family member down.
    For the 2 cents that it may be worth,
    Just a thought,
    ‘Drey

    P.S Mr. Wesley Willis liked Casio keyboards and being a rock star. He said that it helped him to ignore the demons in his head that told him to hit people with bricks.

  41. fries and cheese
    Like Jani, I love Wendy’s fries and liquid cheese! 🙂 That is all! 🙂