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Minutes to Midnight

When Jani last left UCLA on Wednesday, March 24th, she confidently told the staff she wouldn’t see them again until Christmas. This was the first time Jani had ever projected a date for her return. On the one hand, this was depressing, for it now means that when she leaves UCLA, she knows she will eventually come back. She doesn’t leave with the blind optimism we once had, the second time she left UCLA, after we had gotten the two apartments and beginning our new lives living with schizophrenia, that maybe this might be it. After all, she had just spent four months straight at UCLA and we had responded by completely reworking our lives to accommodate her illness while still keeping her with us. The five hospitalizations since then have completely shattered that optimism. We know now, like Jani, that every time we leave UCLA the clock starts ticking again, ticking down to when she will have to come back. Jani has become the living embodiment of the Doomsday Clock, the symbolic clock face created in 1947 by the Board of Directors of the Bulletin of Atomic Scientists at the University of Chicago. The Clock’s distance in minutes from midnight represents how close the Board feels humanity is to global Armageddon. Ironically enough, the clock is typically moved either forward or backward each year on my birthday, January 14th. Currently, the clock sits at 11:54pm, six minutes to midnight. During its existence, the clock has been as close at 11:58pm and never any earlier than 11:43pm. Sad to think that in sixty-three years we have never gotten any further than seventeen minutes from the end of the world.

 

Just like the Doomsday Clock, Jani, has moved around a lot. Just before her third birthday was, I think, her furthest distance from midnight. Back then, she wasn’t even within the fifteen minutes. She was still in the first quarter hour. Even during the hell of her early months, when she never slept, we never thought we were approaching the end. Last Spring, when massive doses of Thorazine seemed unable to stop her violent behavior was probably her closest to midnight. The day she tried to jump out her window was probably 11:57. When she tried to eat Bodhi, that was 11:58. When we thought we could get her into a local residential facility, the clock moved back to 11:56. When, last April, she didn’t recognize me at all, I drove home that night believing we were at 11:59.

 

Then Susan came up with the two apartment idea, one for Jani and one for Bodhi, and Jani’s clock moved back. When we developed the intern program, it moved back again. When we worked out a limited one hour school day with only Jani, her teacher, and a para-educator, it moved back again. When we found out how effective animals were at keeping Jani distracted from her hallucinations, it moved back again.

 

Since then, it has ticked forward and backwards, but like the real Doomsday Clock, we have never gotten further than a quarter hour away. Honestly, even with all the support that we have surrounded Jani with, we are still always within ten minutes of a global disaster.

 

I don’t know why Jani specifically picked Christmas 2010 as her next return date. Maybe she has learned that winter is always her most difficult time. Whatever her reasons, I got the sense that she really wanted it to be true. She knew she would have to return eventually, but she really wanted to get some distance, to try and hold the clock inside her head at minutes to midnight.

 

She made it fifteen days.

 

Tonight, she is back at UCLA.

 

She didn’t want to go. When I told her, she cried and hit at me a little. When I told her, we were visited a woman we visit once a week, a woman who rescues Great Danes. Her house is beautiful, with a large yard, and it is a menagerie. Besides the three current Great Danes, there is a nine year old cat named Kitty that allows Jani to carry her around like a baby. There is a twenty-seven year old parrot named TC that will only talk to Jani, along with another recently rescued parrot that Jani named “Colors.” There is a skittish chicken and a group of doves. This woman’s home is Jani’s Eden and when she is there she is the calmest I have ever seen her outside the time she was on 300mg of Thorazine. More importantly, though, when she is there she is happiest I have ever seen her, the most content I have ever seen her, more so even than with the animals at the local county shelter (which has a cattery where Jani will play with the cats for hours), Petco, Petsmart in Canyon Country (which always graciously allows her to pat and hold their rats), and the horses that we go to visit for equine therapy.

 

It is Jani’s paradise on Earth, and it was a hell of a place to tell her she was going back to the hospital, but I had no choice. If Jani could live there, perhaps her clock would back up and stay where it should be, where it should be for all children her age, if we use one hour as a metaphor for a human lifetime, in the first fifteen minutes of the hour. Maybe, but I doubt it. Eventually, I am sure, this place, if Jani was there enough, would begin to lose its magical ability to hold her illness at bay. I would like to think not. I would like to think that there is a place where Jani could be free and happy forever, but I have walked with her long enough to know that just as much as we never give up, neither does the schizophrenia. It will always eventually find a way to ruin Jani’s happiness.

 

I had to tell her then, because she was ready to leave and it was as good a time as any to tell her that UCLA had finally accepted her for a direct admit. I had spent the last 48 hours trying to get her in and the head of the child and adolescent psych unit had finally said yes. He would not say yes without speaking to me and it took that long for me to get a hold of him.

 

Every time Jani goes back to UCLA, I always go through the same emotional rollercoaster. After the incident that triggers our feeling that she needs to go back, I am in a panic, scared for her safety. I call UCLA, desperate to get her in, and unlike the early visits, there are more hoops to jump through in order to get her back in. Some of this has to do with the standards of Blue Shield, which I skewered in my blog “American Idiots,” because Blue Shield and insurance companies in general will not pay for acute inpatient care unless the patient is an immediate threat to themselves or others. To them, acute means “tried to kill oneself or others.” They fail to realize that as parents we want Jani back in the hospital to prevent this from actually happening. It is like Blue Shield needs Jani to be 11:59:59 to be willing to pay for her hospitalization, when we feel that a hospitalization at 11:56 would prevent Jani from getting to 11:59 in the first place.

 

But some of it is also that UCLA has spent last year trying to steel us for the challenge that comes with having a child with a serious mental disease. During Jani’s first two hospitalizations, totaling five months, during which time she failed to respond to medications to the level that all of us would like, it became clear that there was only so much they could do. So then their focus shifted to mentally and emotionally preparing us for the battle that we have elected to fight by not placing Jani in residential treatment. So part of the reason we have to jump through hoops is because UCLA knows they, and psychiatry in general, have reached the limits of their effectiveness. They know they can re-arm us from time to time but they can’t fight the war for us. I have to jump through hoops to get Jani back into UCLA now because the UCLA doctor needs to know has Jani really taken a turn for the worse or are we just cracking under the pressure? If it the former, they will take her back and take another crack at trying to stabilize her. If it is the latter, they will gently suggest residential “because we need to think about OUR needs as well as Jani’s.”

 

So, once again, it is similar to where we started, when we had to prove there was something seriously wrong with Jani just to get into a hospital. The only difference is that UCLA, unlike Alhambra or Loma Linda, knows there is something seriously wrong. They know Jani has schizophrenia. But there is only so much they can do about it. Treating schizophrenia in children is always more difficult that treating it in adults, but Jani’s schizophrenia remains the most difficult case they have ever seen, the only one since the advent of Thorazine to be so resistant to neuroleptic medications.

 

Of course, she isn’t. In my online parental support group for parents of mental illness, there are many kids who psychosis proves resistant over and over again to “miracle drugs.”

 

Today, we no longer have to prove that Jani is ill. Everybody who matters knows that and ones who don’t mean nothing to me. But in order to get her back into the hospital we have to “prove” that her illness has gotten significantly worse and that her clock really is getting closer to midnight.

 

But as soon as I get her accepted back in, I always begin to doubt myself. Partly this is because there is, because we no longer go through the ER, a sizable delay between the incident that made us feel she needed to go back and when she actually gets accepted, so that when she finally accepted, we are never in an immediate crisis. It is sort of like getting bitten by a rattlesnake. You know you need immediate anti-venom, but you are deep in a canyon, miles from the nearest hospital. So you tie a tourniquet above the bite and start hiking. An hour later, you finally make it out of the canyon and back to your car. You are still alive, when logic dictates you should be dead by now. You don’t even feel the burning sensation of the venom moving through your muscles anymore. The bite stings a little, but you start to wonder if you have actually beaten the venom. Maybe you don’t need the hospital. Maybe you should just drive home. After all, you feel pretty lucid. So you start to rationalize why you are still standing. Maybe the snake didn’t get its fangs in deep enough to really inject enough venom. Maybe it was a glancing blow. You can almost convince yourself that you would be fine with just a little bedrest and some ice. So you have to force yourself to remember that you were in fact bitten by a rattlesnake. You have to force yourself to consider the possibility that the reason you are no longer in pain is because your nerves are dying from the venom.

 

In the moment that I first call UCLA for a direct admit, I am absolutely convinced she needs to go back. But by the time I finally get her accepted, when the fight to get her in is over, I am never so convinced anymore. I wonder if it was Jani just having a bad day, or several bad days. I wonder if I am overreacting. I wonder if I am just not accepting the fact that to a large extent we just have to live with this.

 

So what happened, you ask?

 

Jani assaulted a plate glass partition with her bare hand. Was she trying to put her fist through the glass or was she just throwing a tantrum? It would be easier to know had there been broken glass and blood, but there was only a few scratches and bruises. But hitting glass over and over again with your fist, seemingly impervious to the pain, simply because your therapist is not yet ready to see you is a bit psychotic? Right? Right?!

 

One of Jani’s interns had brought her to her three times weekly therapy session. I was on my way to meet them, coming from Bodhi’s swim class tryout. They were apparently five minutes early to the appointment. Jani threw a fit, throwing a large toy across the room (thankfully the room was devoid of children). Then she attacked the glass partition between the waiting area and reception. When the intern tried to stop her, Jani attacked the intern. Then she tried to run.

 

But when the therapist finally came out, Jani was suddenly fine again, eager to see the fish the therapist has in her office.

 

The same thing happened with me with her session today, except that I kept my body between Jani and the glass. It came on suddenly and left as suddenly as it came. In fact, after each incident of violence, Jani was happy as a clam and had no memory of the violent outburst.

 

And then there is what she has been doing to Bodhi.

Mostly good things. She is sweeter to him than she has ever been. She hugs him, kisses him, apologizes when she accidentally knocks him over, plays cars with him, and even feeds him. She has become the model big sister. Except that suddenly she kicked him in the face the other day. Before, her violence toward Bodhi had always been triggered by her belief that he had one of her toys, or his crying. But now, there is no trigger at all. She will be playing happily with him, sincerely happy, and suddenly she will strike.  He will cry and Jani will look at him for a moment, confused, as if she is not quite sure what happened. Then she is back. We tell her she can’t hit him, but it is clear we are talking to the wrong person. Whomever actually hit Bodhi took over Jani and then left again, leaving Jani to take the fall for something she doesn’t even remember doing.

 

Finally, yesterday, at her outpatient psychiatrist’s office, Jani was having a difficult time focusing on the questions the psychiatrist was asking her. Her psychiatrist noticed that Jani was focused on a particular point in space. She asked Jani what she was seeing. Jani seemed to quickly snap back to our reality and said, “Nothing.” And for the first time, we all got the sense that she had seen something but was willfully choosing not to tell us. Before, when asked questions about what her hallucinations were doing, Jani would happily share their activities. Now, she seems evasive.

 

Is this the beginning of the paranoia, a common symptom of schizophrenia?

 

For those of you who wonder why I have chosen to interact with Jani’s hallucinations, this is why. It is because I feared this might happen one day. As the head of UCLA’s child and adolescent unit told me today when I shared this with him, with schizophrenics, the world of hallucinations gradually, if not aggressively treated, supplants our world, in effect becoming the reality of the schizophrenic. As the fantasy world comes to dominate the real world, the hallucinations become more real to the victim than reality itself, which makes sense when you think about it. These hallucinations are with Jani constantly. They never leave her. Real people, on the other hand, do. In Jani’s case, as much as the hallucinations make her life difficult, they are also more comfortable for her than the real world. Hence, she doesn’t want to give them up. Nor do they want to go away. They, after all, are in competition with us for Jani’s attention. So it becomes very easy for the schizophrenic to believe what the hallucinations tell her over what the real flesh and blood people in her life tell her. I can see why there are still those who believe schizophrenia is demonic possession. The hallucinations will fight back against anything they perceive as a threat to their survival.

 

And I fear we are becoming such a threat.

 

Can you see now why so many mentally ill individuals distrust doctors and psych medications? Of course they do. They are a threat to the fantasy world, which will do anything, even kill its host, to ensure its survival. Schizophrenia is, in effect, a parasite.

 

So the reason I interacted with Jani’s hallucinations, or at least didn’t react to her interactions with them, was because I didn’t want them to perceive me as a threat. If I am least treating them with a certain level of respect, I hoped that they would continue to do the same for me and allow me access to my daughter.

 

I accepted long ago that I couldn’t entirely win over Jani’s mind, but as long as I had some influence over her heart, I could keep pace with the encroaching hallucinations. But I am beginning to fear that I am losing the war of the heart as well.

 

Jani has made many mentions of 400 the Cat lately, one of the oldest and most malevolent hallucinations. 400 keeps trying to get the other cats to drink anti-freeze. Thankfully, we don’t have any. We, and Jani’s psychiatrist, have to ask the same question over and over again to get an answer, but eventually Jani will reveal that 400 is around her. Eventually she will reveal that 400 doesn’t like Bodhi. She doesn’t like Susan either because “Mommy doesn’t like her.” Jani wants to be with me all the time, and now that I think about it, I am the only one who doesn’t tell 400 to go away when Jani tells me she is here. I take Jani to the pet store and pretend to buy cat food for her, because Jani tells me that if 400 gets this or that, she won’t bite. And it is never things a child would want. Jani does say, “If 400 gets ice cream, she won’t scratch me.” She says “If 400 gets salmon, she won’t scratch me.” And Jani doesn’t eat fish.

 

So I pretend to buy 400 Whiskers cat food or a cat condo, and Jani promptly hands this pretend food or condo to something right next to her. And then she tries to move on, rubbing her hands, excited to see the bunnies or the rats in the pet store. But when I think back, I notice her looking behind her every so often, as if she is realizing that 400 is not satisfied. Then she gets depressed without reason. Then she wants to leave.

 

What is the plan?

 

Haldol.

 

It worked once, but it sent Jani into dystonia. UCLA is hoping that this time, paired with Cogentin and Benadryl, they can give her Haldol without the side-effects (Haldol historically has the most severe side effects in terms of muscle shakes).

 

The Haldol will replace the Thorazine, but not the Clozapine.  Clozapine is a one way ticket. Once you are on, they don’t like to take you off because it is very difficult to restart it. So they will try Haldol and Clozapine together. Which has never been done.

 

We are being forced to use the neutron bomb to keep the clock from getting ever closer to midnight. It is either that or residential, and I cannot and will not send my seven year old daughter to an out of state residential facility. Why don’t we move to the state where such a facility is, you ask?

 

Because she still needs to live with her family.

 

Tonight, when I had to leave her, for the first time she cried. And cried. And cried. I desperately wanted to stay, but it was past visiting hours and Jani’s roommate couldn’t get into her pajamas and go to sleep as long as I was there. So I had to leave. And I could still hear her crying through the doors of the unit as I was escorted out. She wasn’t crying for me, specifically. Maybe she was crying for herself. Either way, it was a rare moment of lucidity, a realization of what she has lost.

 

I miss my daughter.

 

I love my daughter.

 

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19 comments on “Minutes to Midnight

  1. So sorry….
    I hope that midnight will recede and bring the dawn. It is humbling to hear about your struggles; compared to a “normal” family, our life with our autistic teen can be restrictive, constrictive and fraught- but I have to stop and pray when I hear about a crisis such as this one. You have a clock and we have a pendelum that swings. Wed- he was compulsive and acting out and all of my alerts were up. Yesterday, he initiated a lesson on the computer that I introduced on Tuesday and we got notice that his waiver medicaid will continue for another year. It’s the medieval wheel of fortune- picking us up and dashing us down. But- we have been able to maintain a better balance up to now (fingers crossed) and I will pray with all of my might that Jani gets there. My child hasn’t been on Haldol (he is on risperdal for agitation and lamictal for seizures), but I heard encouraging things about it from a local provider in the past. I HOPE it works….
    Wishing you and your family peace…

  2. An observation.
    I understand the use of comparisons to situations in each of your blogs. Like the example of the venomous snake. I used to use them a lot when I felt it would simplify people understanding and seeing the situation a little clearer.
    But as a critique to your writing (since I had seen on older blogs you said you accepted literary critiques) they are being a little over used. The situations seem clear enough without you having to make comparisons.
    You’ve begun using them so often I think to myself before I read each new blog “I wonder what he will compare it to this time” and I skip them because they are beginning to feel tedious and run into the ground to read.
    If my memory serves me right I think I recall from long long ago in your blogs you used to use this tactic on teaching Jani how things worked. Maybe it’s a habit from that (I could be wrong you ever used it with Jani, maybe it’s my mind playing tricks).

    I loved the blog, I simply thought I would let you know one persons opinion on your writing.

    Note from Michael: Noted and definitely appreciated, Ashley. I think part of it is because this is so hard to explain to those who don’t have any experience, part of it a way of creating emotional distance so I don’t break down while writing, and part of it is just me needing to get better as a writer.

  3. I feel your pain. We crossed over into being the bad guys to my son’s hallucinations early on and can’t trust when he claims not to see anyone. They threaten to kill me and he is frightened. I completely understand why you have interacted with the hallucinations. Sometimes the popular choice isn’t what’s right for your child. Only you know what is best for her.

    We are also against residential, at this time. It’s all we hear from every professional. We have even been told that we are being irresponsible. We could be charged with a felony, if any of my 3 hurt my other chidlren. We recently made the decision to make our home more institutional, like you all did. We are adding cameras to every room in the house and reattaching the bedrooms door alarms. Having 3 psychotic children that are triggered by their PTSD is a nightmare. We can’t leave them alone for even a second, some days. In the discussion my husband and I had, he mentioned separate homes for our family and I burst into tears thinking of your life. We are desperately trying to avoid that but it may very well be in our future.

    You wrote about Jani’s incident at the therapist’s office. We see the same thing. Ours will change for a few minutes and then right back to sweet little selves they go. It is so fast it will make your head spin. Mine are never fully aware of the incidents afterward. They have a general idea of what happened but will not remember it at it’s worst.

    I find such comfort in reading about your life. It has helped me come to terms with their illness, find ways to help our family cope, and puts words to what we are seeing. You are helping people even when you are just venting. Thanks you again.

    Rachel DeBruce

    Note from Michael: Thank you, Rachel, for sharing, because I want America to see Jani is not the only one. This is why we are trying to create the Village Project so that families can stay together in safety because there is always trained support close by.

  4. Hey – Haldol sucks, as far as side effects, go, but it on top of the Clozapine kept him out of the hospital this past March for the first March since 2005. He’s got the tremors too, but he’s also got about 120 lbs on Jani, so he tolerates it better.

    Man, I hate that your descriptions of Jani’s behavior is getting more and more like Tim’s. The only difference anymore is Tim’s catatonia (we only had one incidence during his week long visit home). That is the scariest of all – totally trapped in his own head. I hope Jani never picks up that one.

    Note from Chrisa: Catatonia, and death, are my two greatest fears for Jani. I can’t imagine what it feels like when he goes into such a state. Do you know if he is coming back?

  5. Michael, I believe this is the closest you have come to bringing me to tears. I’m not even exactly sure why. Maybe it is because, while my psychosis is no where near the extent of Jani’s, I related so much to this post. The Doomsday Clock is such a wonderful metaphor that represents a reality very close to my heart. For it seems, I am constantly ticking near crisis and suicide, and there are multiple forces – both internally and externally – that are pushing me back and forth. She, the evil ghost that is a constant, haunting presence, being one of the major factors pushing me forward. It scares me to think I am so much at her mercy. That any day now, she could come and take over my world once again, filling it with her fragments of her dimension (between this world and the afterlife, she created it), creatures, spies, demons, and more spirits. Which is another thing mentioned in this blog that I immediately connected to, is the statement that psychotic disorders can completely take over one’s reality. I have never experienced this to the full extent (as in, I always responded at some level from real world stimuli); but, I do remember times where I was so far pulled into “her” world (she was dragging me there) that I trusted few, was injured frequently in an attempt to resist her orders to harm others, injured myself at her command, and talked to almost no one. Unfortunately, after months of freedom from psychosis, I feel her creeping back up again. I’ve seen her spies, demons, and pets popping up near me. I let my psychiatrist know, so we will discuss it at our next appointment and hope I can fight her off once and for all. I hope Jani can do the same, or – at least – find happiness in the eye of the tornado.

    Note From Michael: Thank you so much, Eri, for sharing your experiences and what you live with. I admire your strength. Even when you feel weak, you, and Jani, and Becca, and Brenna, and Ailish are still stronger than anyone else I have ever known.

  6. As always a beautiful blog entry. I wish I had more time to write but I dont.ILL keep you in my prayers..

  7. Michael, to me you are super-hero. Where does your strength come from? When fathers leave their families for the slightest of reasons, your love for Jani is unshakable. I have a 7 year old son and your experience has changed me forever. Several months ago, I heard of your story and I’ve wondered about your family. I’m so glad to have found your blog.

  8. Hey Michael. Beautiful, heart-wrenching entry as always. I feel scared for Jani, and you. Having studied a bit of psychology, and having suffered mental illness myself, I can understand how risky this medication choice is. But you do what you have to, and I hope she does well on it.

    One thing…

    “Can you see now why so many mentally ill individuals distrust doctors and psych medications?”

    It’s true that many mentally ill people distrust doctors due to paranoia, or enjoying their fantasy world. But that is far from the only reason.

    Personally, I don’t trust them because they turned me away when I was acutely and obviously suicidal. Twice. I had self-inflicted wounds that should have gotten 15 stitches. I was coming out of a psychotic episode and still having thought disorder.

    Why did they turn me away? Once because they didn’t feel like dealing with my insurance, and once because I didn’t fit some mental illness stereotype of crazy people throwing chairs. They said I looked “too calm,” ignoring the gaping wounds I had and the fact that I had tried to OD two days prior.

    That’s why I don’t trust them. Because they refused to help me when I was in need.

    I also know other people who have been severely physically, and even sexually abused while in a psychiatric unit. People who’ve spent their entire stay, in excess of a week, knocked out on tranquilizers. People get abused in these places all the time.

    You’re absolutely right that sometimes it is the mental illness itself that makes people not want to get help. But that’s not all it is. Not by a mile. I begged and pleaded to get help, and I was turned away.

    You don’t trust Residential for the same reason many mentally ill people don’t trust the system in general.

    I’m not being anti-psychiatry at all. I wish everywhere had a hospital that tries as hard as UCLA. I wish everywhere had out-of-the-box treatment to compliment it, like the equine therapy Jani attends. Psychiatry is another tool in the arsenal of combating mental illness, and sometimes it’s the best tool.

    But our psychiatric system, as you know, is badly broken. And this is a big reason why the mentally ill don’t trust it.

    Note from Michael: Cassie, you are absolutely right on all fronts. There are definitely legitimate reasons not to trust psychiatrists. Thanks for sharing.

  9. They say that psychosis can have an innate healing capacity. I find this is moreso the case with myself when there are identifiable stressors that can be removed. They can be subtle things, like the way someone else expresses concern or relation, an increase in activity or emotional demands on me – I’m not blaming you, that would be like blaming the victim, and you probably know this. It did sound like it was getting bad and I hope the medication switch helps. It is much quicker to get back to higher functioning if you don’t slip as far.

  10. Michael, I feel your pain, living with mental illness myself. You are an amazing father with a beautiful family and an extraordinary daughter. I know it is difficult, I know what I write will not be able to soothe the frustration and sorrow you feel sometimes, but please know that there are many people who are rooting for Jani, and that she will prevail. Each day is one step at a time, sometimes there will be set backs, but there is always hope for tomorrow and the next day. Living in the moment, cherishing the little improvements, little steps always helps. Please stay strong!!!

    Note from Michael: Thank you, Allison.

  11. Haldol
    Oh, Michaesl–Haldol? Ever since I was in nursing school and they gave it to my mom (to sedate the little ole lady with brain cancer–never mind she was seeing the “nerologist” for Tardive Dyskensia in the 1st place) I have hated the stuff. I don’t know enough about the pharmacology to know for sure if the other meds wiill affect the Haldol, all I know is when you get side effects from Haldol they come for good–and forever. At this point, you may be willing to weigh the pros and cons–I can certainly understand that. I only know that I am “allergic” to Haldol and its newest relatives the ASAP’s–and compazine, and I hated thew EPS side effects they all caused.

    You’ve fought the good fight for a good many years now–maybe its time to think in another direction?

    Blessings, chinacat

    Note from Michael: I don’t see another direction. Also in Jani’s case, Haldol doesn’t sedate her. Nothing does. I don’t expect she will be on it forever. The goal of the Haldol is to buy us time until she gets older and hopefully the Clozapine will have more effect. That is, at this point, the only option I can see.

    Further note from Michael: The haldol seemed to be having some effect in the hospital but that hasn’t translated over since she came home. If the 2mg of Haldol daily fails to produce enough positives to outweigh its risks, I would remove it. I would never leave her on a medication if it wasn’t working. So the jury is still out. I think within a week or two we will know if the Haldol is justified. It would have been nice if UCLA kept her longer for observation but Blue Shield wanted her out. I would STILL like her to have a “wash-out” and long observation off all medications, which is why I wanted her in the NIMH study. But her ischemic thalamus was considered a brain injury that precluded her from they study. Regular hospitals won;t do a wash out because insurance won’t pay for it as they don’t consider observation “active treatment.” She needs a safe environment where she can be pulled off all medications so her schizophrenia can be observed free of medicinal interference but there is nowhere safe to do this.

  12. Hi, Michael.
    I’m a 16 year old girl that suffers from bipolar disorder. Mental illness is in my family history; my uncle suffered from schizophrenia, and actually took his own life while in a home. Perhaps that’s why I connect so much with your story. I’m not exactly sure where I stumbled across your website, but I’ve been following your blog for months. I’m currently writing a research paper regarding childhood-onset schizophrenia for my honors literary class and I was wondering if I could reference your blog. The information you share with us is so much further in depth than any other source I can find. I want to thank you for being so open and strong.

    Note from Michael: Lauren, you are more than welcome to reference my blog. If you would like follow up with me on something particular feel free to email me at michael.schofield@csun.edu.


  13. Even as an English professor, words sometimes fail me. I make a living being able to put my thoughts into words…to express myself in a way that inspires others. Today you have done a much better job than I could ever do. I read your blog all the time (first time caller..long time listener), and want you to know that you are in my thoughts, as is the rest of your family. Your story has touched me more than you’ll ever know. Continue to fight the good fight. In the end, you may be all that Jani has. Blessings to you and yours…

  14. Thoughts
    Hi Michael,

    i sent an email to your site not knowing i could respond here.

    I wont repeat all the good wishes as you have prolly heard enough of that!

    Just wanted to know how the Haldol is going with the Cogentin? Has there been much EPS? i cant believe they ever gave it to her without the benztropine (cogentin)! Dystonia and Akathisia are so frightening.

    Also as i raised in my email, have you ever thought of a return to Australia? Our health insurance systems is light years away from the US. Here private insurance means you are COVERED. I know it would mean losing touch with the rest of your family. I just cringe when i hear the struggle you have with the insurers, that is just not heard of here, unimaginable.

    Having experienced psychotic depression i want you to know that your williningness to go in to her world and engage her and bring her back to ‘our’ world is the greatest gift of all. It is so very beneficial. I wish you the strength to continue that.

    How are the white blood cell counts going?

    PS – Are you a former military man? you make some very poignant references and analogies to combat situations that make me feel you have been there?

    Love . Luke

    Note from Michael: Luke, we use Benadryl, not Cogentin. Cogentin is not as effective against EPS for Jani as Benadryl. Second, yes certainly there would be no issue with getting coverage in Australia but Australian doctors are notorious in the US for outright refusing to diagnosis childhood mental illness. Many of them still believe it is only an “adult” condition. At least this is what I hear from members of my online support group based in Australia. Third, no I was never in the military. Came close, but no. I use military metaphors a lot because it helps me to keep going. Schizophrenia is an incurable disease but looking at it as a war helps me to keep going.

  15. umm, hi?
    Hello, my name is Louise. I heard about Jani on Discovery Health in a commericial for Psych Week. I really want to watch the show on her so I went to the website to get some more info. It had a link to your blog, and I just want you to know I find you incredibily inspiring. This post made me cry, I would not be able to cope with what you are. I wish you the best of luck and I will be praying for you and your family.
    Blessed Be,
    L.Z.

  16. You and your family inspired me
    I just watched the show about your family on Discovery Health and just felt I could not continue to keep tabs on your family. You and your wife are such wonderful parents and Jani is so lucky to have you. So many people would not be able to handle the daily stresses. I am a mom to 3 healthy children and I worry every day about them I also feel like I gripe about them and yell at them so much more than needed. I plan on trying my best to be a better parent after watching your show. I just can not begin to tell you how you have touched my heart. I will continue to keep up with your inspiring family and I will pray that some one some where will come up with a way for Jani to have a really great childhood and adulthood, although I think she has the best childhood possible right now right where she is with her loving family. They always say God will not give you more than you can handle and I think you are proving him right.

  17. I look forward to the day when
    the prophecy at Isaiah 33:24 which says “no resident will say I am sick” is fulfilled. I look forward to the day when the prophecy at Revelation 21:3,4 which says “With that I heard a loud voice from the throne say: “Look! The tent of God is with mankind, and he will reside with them, and they will be his peoples. And God himself will be with them. 4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.” I look forward to that day for the sake of people in my life who struggle with mental illness and for the countless others out there like Jani. God has a better track record for keeping his promises than anyone else. I’m confidant that Jani will someday live the life that you want for her.

  18. Our children are sharing the same floor
    My son was admitted to UCLA Thursday evening. When my husband and I went to visit on Friday, I saw Jani calling to my son to come back and play. I was mesmerized. I had seen her before. I wondered if it was from a previous hospitalization in San Diego. Then I saw her name on her door. I remembered seeing your family on TV. I just wanted to say how very sorry I am for your family. We certainly know the struggles. Reading your blog has brought forth so many emotions and I just wanted to thank you for sharing such raw truths. It is comforting somehow to know we are not alone in our daily struggles and crushed dreams. Our son has multiple diagnoses with bipolar disorder seeming to ring the truest. His little sister is autistic. Peace and healing to you and your family. You are in my prayers.

    Note from Michael: Hi Kim, I wanted to delay making this comment public until our kids were out of UCLA. For security reasons, we don’t publicly announce anymore when Jani goes back into or out of UCLA. Sorry I was so tired that day we met. I had been up all night trying to finish my book.