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Screenwriter’s Blues (Listening to Los Angeles)

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

 

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

 

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

 

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

 

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

 

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

 

Until last night.

 

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

 

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

 

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

 

That was a waste of a paragraph.

 

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

 

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

 

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

 

And he is getting worse.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

One of the doctors calls 911.

 

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

 

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

 

UCLA has their own EMTs but they take forever.

 

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

 

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

 

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

 

He is calming down.

 

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

 

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

 

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

 

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

 

It is a five minute drive back to the ER.

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

***

 

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

 

No answer.

 

Which is why “fame” means shit to me.

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

35 comments on “Screenwriter’s Blues (Listening to Los Angeles)

  1. I have no words of comfort for you as I do not understand what your going through, just know that one person read this tonight and cares. I am positive there are millions of people who care but maybe it will be more real knowing that one person in Sacramento cares right now.

  2. Yes it is your pain. But doesn’t it help to lighten the load of that pain to share with others? I can’t imagine having to hold in all of that to myself without exploding, I just couldn’t do it. Stay strong.

  3. Thank you for posting this. I can’t imagine what you’re going through – to say I could would be a lie. You and your family have been in my thoughts for awhile now. We communicated (very briefly) through your previous page a few years back, I doubt that you would remember the exchange. Stay as strong as you can and remember that some of us out here care on a deeper level, without ever having met.

    1. I can’t believe that this all is happening. I have just read “January First” yesterday, the whole book in one breath and now I read Your blog, the last message given just today, here in Warsaw, Poland it’s still 31 st August, around 11 59 pm now. I found January on the net just few days ago. I am really sorry that You have to face this all I mean the psychiatric diseases of your children, first January and now Bodhi.

      I had bulimia and I still have borderline personality disorder, it’s sth also incurable but is not really qualified as psychiatric disease but it’s emotional disorder. I think I am again worsening, but somehow You as a person and Suzan, January, Bodhi, the history of your family that you have created with Suzan comforts me in some way. I mean seeing You fighting for your children by thinking about them, how do they feel, what is happening with them, giving them happiness of everyday life, emphasizing with them. That’s something very admirable.
      My disorder is a combination of genetical disposition and of abusive childhood. My dad made a hell out of world for me when I was child. He also abused me sexually which made my mother hate me since I was a small girl, as I was acting strange and she was ashamed of me. There is a plot in your book ” January First” about molesting and God I really was touched by Your way of thinking about it, when You were analyzing it and the way You felt about it. Now I am 32 and independent but I still have some mares and I feel how my disorder affects me, I am very lonley and I am again after 7 years thinking about dropping off my therapy as I feel my therapist doesn’t give me what I want, more of herself.

      I was also touched how You have tried to reach Calalini when talking to her and made the surgery with Jani in order not to loose a contact with her.
      Even the therapist doesn’t want to get an insight into my imaginary world which I created when I was a child. When I was a teenage I wanted to get a schizofrenia in order to touch it not only with my mind but also with touch, taste and smell, I think I was close to it, I couldn’t believe that my imaginary brothers don’t exist. I didn’t realize that schizofrenia has so many tinges.

      I would like to conclude by saying that I didn’t want to believe that there is something like genetical psychiatric disease, and so far I wanted to prove myself that only the influenze of environment makes someone mentally ill although I perfectly know from the sources that even my disorder is genetically predisposed. By reading Your book, seeing the interviews etc. I realized that I didn’t want to admit it because that fact ( that not only environment but also I was born with this disorder) made me feel worse than others there was and there is still not anybody in this world who would fight for me like You and Suzan did for Your daughter and son.

      1. Karolina of Poland, please know that you are in my thoughts and prayers. Heal from your wounds and look to the future. Know that you are worthy of love, you have a beautiful soul and you should not punish yourself. When you have the nightmares or feel bad, take a deep breath and tell yourself you are good, you are worthy of goodness and try to have the best life you can make. God bless.

  4. I found your blog years ago and have checked in periodically since then. How wonderful it is to hear that Jani is doing so much better. How awful to hear this about Bodhi. It is incredibly unfair that you and your family are living this hell once again. “I’m sorry” seems so pathetically inadequate. I guess I’ll just say that I am one more person thinking about you and Susan, Jani and Bodhi, and wishing you an end to this hell.

  5. You, Susan, Jani and Bohdi are always in my prayers. I have a severely mentally ill child myself. I have been through days and nights as you just described above, wrote of in January First, and try to keep balled up inside. Through all the skeptics and non-believers, there are many of us who have looked at that sky in the middle of the night, trying to hold ourselves together, trying to find a friend for a ride, trying to find the strength to make it just to the next day, knowing the hospital that just admitted your child will only be safe as long as the insurance companies will allow them to stay, be it 72 hours or less than 24 hours. But tonight he, you and your family are safe. I pray things improve for Bohdi as they have for Jani, but you and I both know it will be another long road, as it has been with Jani. Sending love and prayers.

  6. I cringe as I read about you trying to keep your son safe in the midst of his rage. My heart goes out to you and your family. As the mother of an autistic son that has exhibited many self injurious & aggressive behaviors I understand that you feel this is your pain and yours alone. I just want to share with you that I have had a horrific experience driving about 300 miles while my husband struggled to keep our son from slamming his fist into his own face! Danny had a helmet on, but he was pounding at his face. It was a ride that I don’t really recall as far as how I got us home. It seemed at times that I was on auto pilot or more likely that angels were guiding me safely home. It feels like no one believes that this type of behavior really happens and there is nobody to help prevent it!

  7. Just finished your book. I loved how real and honest you were. I read it in less than two days. Your strength is admirable, and I pray for you and your family, and that you can find the strength to keep going. Your kids are so lucky that they have you and your wife, Not everybody could be so strong and supportive. I am deeply sorry to hear about Bodhi.

  8. I will pray for you. As a MI adult, you saved my life by adding me to the support group. I am one person, and when I think I am worthless, like right now, I realize how selfish that is of me because you fight for people like me. Your fight and pain is so great. There are no conciliatory words I can spout that will make y’all feel better. Except that I am not the only one you saved. You are saving your children and I imagine there are others too. So, I guess that qualifies you and Susan as heros, and if that isn’t incredible, I don’t know what is.

  9. I am with you in solidarity and pain. I have bipolar disorder and am going through a really hard time in my life right now. It’s between a rock and a hard place where no decisions are “good” decisions and one is always looking for what is the “least worst” choice. I admire so much how much you speak out for and clearly love your children.

  10. Michael, just to let you know that I have reported the “Anonymous” user who has pasted 100+ comments on the amazon website, reviewing your book “January First”. I reported it as “abuse” as it is in breach of the Amazon Conditions terms of use, which state that no “defamatory, chain mail, or mass mail” are permitted in comments or reviews.

    Could all supporters of the Schofields please to do likewise if you have an amazon account. If they get enough complaints they may shut this person’s account or at least ask them to desist. They are obviously mentally unstable, which is ironic really, as the book is about mental illness.

    I know that the Amazon reviews are replete with people who defame others all the time, but lets hope this one can be dealt with. But they will only do it if People COMPLAIN (please others who read this blog).
    This person is obviously a nut-job, and certainly reads this blog.

    Why can I defame -you, you ask? Because I am not in breach of Michael’s conditions of use of this site my friend, whereas you are…… and you call yourself Anonymous – obviously a coward.
    Best wishes.

  11. Hello, I’ve watched the documentary on January and Bodhi. Congratulations to January and the entire family for getting past the heavy stages of her schizophrenia, and hope that Bodhi will come along, at least to live a normal life as well. I’ve had relatives who suffered from schizo and bipolar disorder, and it is no fun at all.

    I think you may be interested in trying a new approach to Bodhi’s (possible) autism. Do some research on Bentonite Clay for autism, and what you find out may be surprising.

    http://www.clayforautism.com/

  12. no magic words, sure wish I had them or a magic wand or a magic ??? just want you to know, yet another stranger in nor cal thinking of your family and lighting a candle for peace and safety for you all. bless your hearts, all 4 of you and the untold thousands you are helping daily.

  13. Thank you for sharing this bit about your family. It’s at least out of your body and mind and on paper and I am holding you in my heart. You and Susan and B And J. I don’t say much but I’ve followed your family’s journey for years.

  14. No one will ever understand your pain, it’s your children you have right to get upset and become an “asshole”, when no one is helping you, those people who say bad things about you obviously don’t understand the extent of what a mental illness can do to someone or the family. This is the first comment I’ve left, but reading January First my first thought was how strong you are, you never gave up on your children. You should be a very proud father.

  15. Michael, I have been so distant from your family for so long now because of my own hell..But I wanted to take a lapse from that and catch up with you all so I came to read your blogs here. I’m shocked and so sorry to hear that this is what’s going on. I hope Bodhi is more stabilized since this was written. I hope you’ll continue to not hold this all within you. As much as I can say I do get it, that is so much to hold in.
    HOWEVER, it is SO wonderful to read all that about Jani!!! WOW!

  16. I am so, so sorry for your pain. I have a child with severe ADHD, bipolar, and PDD who was terribly unstable for about 4 years. I was physically, emotionally, and spiritually bankrupt for those 4 years. I was humiliated and terribly alone because no one can truly understand until you’ve been in the trenches. Hospitals, police, rages, self-injury, ranting, violence towards me, physical and emotional scars, destruction of property, suicide attempt, a pharmacy of meds with a host of awful side effects, bad doctors, ER visits, crisis hotline calls, judgmental people. I pray for your family healing of mind, body & soul, peace, comfort, hope, relief, answers, and doctors who hold the key to successful treatment. You’re so right – the dx is insignificant at this point. I wish we lived closer because I would love to help out physically with Jani and Bohdi to give you and your wife some respite. Something I wish someone had done for me.
    I admire your and Susan’s dedication to your kids. We do it because we know we are our kids only true advocate, that no one can love and care for our kids like we can, and if we don’t fight for them, then who will? I have followed Jani on TV and look forward to reading your book. I don’t even know how to encourage you to soldier on when I know there are times when words are meaningless. Know that people (myself included) are proud of you and Susan. Keep up the good fight, my friend, and God bless.

  17. I sure understand our frustration with people. I have been recovering from some horrible childhood issues and have had people, even a family member, say to me “Why didn’t you tell someone, you must have liked it” Really. I worked with Autistic children back in the 70’s as an intern considering that to be my career choice and my daughter has her Master’s in Special Ed. She had a child in her class that bit, scratched, hurt herself on a daily basis. My heart goes out to ya’ll and to your sweet children. Our society needs to get a grip on mental health issues in children and offer the parents help as well. God bless

  18. Those who have accused you and your wife of abuse, (I need not repeat the accusations, you have been berated enough), are ignorant and incapable of empathizing. They have seen shows, many of which have been manipulated and taken out of context – and the fact that you hold no ill will to the entertainers who have slightly altered the way you choose to tell your story is just…mind blowing. They have not seen your life at home on a daily basis, they have not held Bodhi down, they have not had their hearts ripped from their chests as their little girl/boy is screaming in pain from something they can’t see or fix. I admire your strength, as well as your ability to see from outside perspectives and oppose them logically rather than with raw emotion, which would be understandable coming from a man in your position. I imagine you are so busy that you rarely get around to reading these, but I wanted to let you know that I don’t think many people are suited to cope with something like this, and my heart goes out to you and to your children. As a young woman with no direction, you drew my attention to an area of medical science I’ve never considered working in, and after hearing some of your family’s quarrels, I feel inspired. Now that doesn’t guarantee I’ll march right off and become a neurologist, but it showed me how blessed I am, how many things I am free to do that Jani may still struggle with when she’s steadily approaching 20 like I am, and it showed me that I could spend my life working with girls and boys like her to give them everything I can – and I suppose you’ve made that the point. Keep up everything you do, you and your wife are good hearted people.

  19. Just saw your plight on Oprah where are thy now. My heart goes out to you and your family. It has to take a lot of strength to handle the day to day challenges. My prayers go out to you. I am a Christian and truly believe in the spiritual realm. I believe Jani may see into the spiritual realm. Demonic spirits are as real as Angels. Have you considered exorcism?

    1. Jani is doing very well. She has come so far, which I think should have been obvious in the OWN “Where Are They Now?” She has gotten even better since that was shot over a year and a half ago. Medication, therapy, and Jani’s own hard work has done so much.

  20. F*** everyone who judges you and your family. Your book is on my list of things to read and just moved to the top. Bless you, your family and everyone who suffers.

  21. I just finished “January First” and I am so glad your daughter is doing better but sad that you once again have to endure these new struggles with you son. I am equally sad about those who choose to judge you. I had a schizophrenic mother and I can appreciate everything you have gone through and continue to go through. You are who I wished I could be during my mothers illness. I chose to refrain from interaction with her for 3 years only for her to pass away alone leaving me with much regret. I have walked in your shoes with my parent not my child and know every feeling you felt and applaud you. I applaud everything you have done for your family. I am so angry with those who have judged you and your actions. They really have no clue…. this mental health stuff is not black and white. There is no manual to caring for someone with a mental illness. Screw all those people who think they can do better. They just have no idea…

  22. I am 23 years old. Diagnosed schizo-affective when I was 16. It’s easier for people to accept you when you are a kid. When you get older you just try your best to keep it together. I am okay although every day is a struggle. I hope that both Jani & Bodhi are able to find peace within themselves and in other things. I hope they are able to be happy and successful in their lives. I feel I am learning how to do that–slowly but surely. Love to all of you and thanks for sharing your story. It makes a difference to a lot of us.

  23. Michael, I will not insult you by saying I understand or know how you feel. I don’t. I can only extend my hope that today, Bodhi has improved and that perhaps, you are finding some answers, therapy wise, to help him. I pray this is the case.
    I am praying for you and your family.

  24. Just wanted to let you know I wish I could do more. Don’t let the idiots get you down, you’re doing great with an unimaginable situation.

  25. Hello, Michael:

    My name is Lorena, from Colombia. I don’t know if you remember me. I replied to one of your posts in your former blog a few months ago. You invited me to join the facebook group, but I didn’t do it, partly because I don’t have a Facebook account and partly because this has been, in general, a really bad year for me and it is hard for me to do a lot of stuff, such as socializing, even if it is through the internet.

    I wrote to you first the day after I saw the documentary about Jani. I was touched, and moved, and in awe of your strength and commitment, but at the same time upset and worried for Jani, her health and her future.

    I am so incredibly relieved and happy to read that Jani is doing better. That she has “recovered” (and as mental patient myself I know how inadequate that word recovery is). I am so happy and proud to know that all your efforts have given results. That she is going to school full time and that she has friends. I really hope you and your wife are very aware that YOU DID THIS. It is your victory and triumph as much as it is hers. You didn’t give up. You didn’t give up on her. And that is… one of the most amazing things I’ve seen in my life. I know the struggle is not over. I know it will never be over. I know that she and your family will have to keep living with this and trying to find ways to fight it for the rest of her life, but you have come such a long way.

    I am sorry for what happened and is happening to/with Bodhi. I can understand the anger, the frustration, the pain and the fear. I know you won’t give up on him either. I know you will keep fighting for him and I know you will find a way for him to be better, as you did with Jani. It is unfair, and I know you’re tired, and I know you don’t want this to be happening to him, and to any of you. I can relate to some of the things he does. I bite myself (my hands and fingers, my lips very often) and I bang my head against things when my feelings get too overwhelming and I can’t explain them, or when I simply can’t handle them. Verbalizing my feelings sometimes helps, but since I have yelled at and hurt people I love when I do that, sometimes I prefer to hurt myself. I don’t know if the fact that he can’t verbalize what he feels and the thoughts that he is having has to do with the level of violence towards himself. The constant battle inside his head, you called it. I can barely deal with this as an adult, I can’t imagine how hard it must be for him as a child. And in the midst of that hell he’s living, I am completely sure he finds a lot of comfort, even if he doesn’t fully understand it, in the fact that you are there for him. Protecting him, holding him, supporting him. Believe me, it would be so much harder, if not impossible, for him to go through this with you and your wife. I know that will make a difference, a huge difference, like it did with Jani, and that it will give him the opportunity to find a way out.

    My family gave up on me since I was a child. They chose not to understand this and not to fight it with me. Now I am an adult and I have been struggling for the past 20 years to have a functional (and in the best case scenario happy) life. I had some improvements and achieved some things that allowed me to live a fairly close to functional life, but it was an almost unbearable struggle with a lot of obsticles in the way. Two years ago I had a fallback. I haven’t been able to recover since then, and I am getting worse by the day. I lost my significant other, my friends, my business. A few months ago I stopped going out completely, talking to people, working, showering, eating regularly. I’ve looked for some help in the health system, but the mental health care is very precarious. I could get better help if I had the money to pay for it, but hey, expecting that from someone with several chronic mental illnesses is expecting something unreal. The only end of this story I can see is suicide. I have been planning it for a while and thinking about it is actually the only way I can sleep at night.

    But here’s the point of telling you this: I know that if my family had fought for me and my health like you have fought for your children, my chances of getting better would had been much greater. If they had been as persistent as you, they would had probably found a right combination of meds or a right therapy, or something to help me. Now, as an adult, if I had the support of my family (because doing this by myself has been so f*cking hard and I am completely out of strength and faith now), but specially, if the mental health system had any interest in helping me, and figuring out my symptoms and helping me, maybe I wouldn’t be in this position. The fact that my family didn’t care to help me made all the difference. I can’t do this alone. I can’t. It’s too big, it’s too scary, it’s too confusing. I needed a lot of help. I needed care and involvement. And they chose not to do it.

    You chose to do it. You chose to stay by your children’s side. You chose to educate yourself. You chose to look for professional help. You chose to fight until the end of your strenght. Your girl has now a better life thanks to your brave and loving choices. Your boy will too. You chose to help other children too. And this fight will make a difference in their lives too, I know it.

    From the bottom of my heart I thank you for that. In the name of all those children, I thank your. Because there’s people in the world like you, who doesn’t give up.

    Many hugs to you and your family, especially to Bodhi right now.

    Lorena

  26. I hear you. Fight constantly, never give up. Believe always it can and will get better. Live that thought and it WILL come across to your little ones. Your family’s life is unique, but it’s yours. You and your wife are their light. Keep shining. Cry as often as necessary, get angry when needed, and stay human because after all that is all that you are.

  27. Hello Michael,

    we don’t know each other but this brought tears to my eyes. I can’t believe there are no professionals out there with the passion and the motivation enough to offer their help in a case like this. I have no experience in this but seems to me like you are going through one of the worst experiences in life, seeing your kid suffering and feeling hopeless. I pray for you and admire your strength, you and Susan are just amazing, unbelievable strong human beings. I wish I had the words.

  28. Michael I would love to get whole of younonstop now on facebook bipolar nation radio I sent a message I have a question id really need your help so much. This is my last attempt can you or Susan please contact me on facbook Emily klaras (facebook.com/sweetparadise6 or email me @ emily8104@gmail.com its about bipolar and scizophrenia in young adults and young kids and medications. Please help me. I know ur busy but I’m dying to talk to you or Susan your so educated and have been the most help to me. I’m dying inside everyday and I think you and Susan may understand me better than most. I’m suffering too. K will keep bodi in my well wishes and prayers. Thank you so much!

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