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Dead and Gone, but Not Forgotten (Sing)

2,366,820,000

 

That’s how many seconds you would have lived if you died on your 75th birthday, the average lifespan of the American male. 2 point 3 billion seconds. That’s all you have, if you’re lucky.

 

1,104,516,000

 

On January 14th, 2011, that is how many seconds will have elapsed since the day I was born.

 

I am too tired to do the math to figure out exactly to this second as I write how many seconds have elapsed in my life, but I am easily over one point one billion. And they are still ticking away. Tick, tock. Tick, tock. Tick, tock.

 

But this isn’t about the inevitability of death, even though as a smoker I probably won’t make it to 75. This isn’t about what I have left. This is about what is already gone.

 

One point one billion moments gone. Gone forever. Similar moments may come again but if every second is unique, and in some way they all are, then the ones that have already passed are gone, never to return.

 

I have already lived them.

 

What bothers me is not the seconds left. What bothers me is the ones that have already gone. What bothers me is what I missed.

 

A second is so little time. So little time for something that will never come again. So little time to savor a moment, because seconds cascade after each other like the 500,000 gallons of water that go over Niagara Falls every second. Before the human mind can even process the presence of a second, it is already gone, followed by another and another and another. So much of our life slips away while we are busy thinking about seconds before or seconds to come.

 

How many of those one point one billion do I remember?

 

Not many.

 

Not enough.

 

Or too many.

 

It’s one of the reasons why writing this book is so difficult. How do I pare down the 260,350,200 seconds since Jani was born into 88,000 words? That’s approximately 3000 seconds per word. 49 minutes per word.

Tick, tock. Tick, tock. Tick, tock. They are still going.

 

The most common question I am asked by people who hear of our story and who do not have a special needs child is “How do you do it?”

 

Like there is a choice in the matter.

 

In essence, they are asking me “How do you keep going?” What is left unsaid is the other half of that question: “…when you know schizophrenia is a lifetime illness?”

 

In other words, how do I keep going knowing that this is for the rest of my life? Actually, it is longer than that. I will still be worrying about Jani the moment I draw my final breath. If there is any life after this, if any consciousness remains, I will remain worried about her until the end of time, until the seconds run dry. I will worry about her for eternity.

 

I will worry about Bodhi for an eternity, too. I will worry about every mentally ill child I have met and still have to meet. I will worry about the ones I don’t yet know about, still out there in the dark. I will worry about your child, mentally ill or not. If I have come into contact with your child, if I have learned their story, I carry that with me forever, or at least until there is nothing left of me to manifest an emotion.

 

I still get emails suggesting cures. I appreciate their concern but I am not looking for a cure. Even putting aside the spiritual suggestions, I have to evaluate the whole concept of a cure. I know several people who work tirelessly to raise funds for various cures, in particular cures for various cancers, like breast cancer. I admire them. I do. There are organizations out there raising funds for research into medical cures for mental illnesses, even schizophrenia. I admire them, although that is not my area of advocacy. I advocate for the lives that mentally ill children live now, not for what might be, but I am glad they are doing it.

 

It is not about an absence of hope. That is not what I feel. I have no idea if a cure for schizophrenia will be found. One day it probably will.

 

But the seconds are still ticking away. Life is still slipping away. I cannot wait. None of us can. We have what we have. We have to make it work. We have to improve life as it passes us now. I suppose I don’t think about a cure for the same reason I don’t think about heaven. It doesn’t matter. Whatever happens when we get to end of our lives really doesn’t matter. Should we really let 2.3 billion seconds tick away worrying about what comes after the last one?

 

So I don’t want us to let any more seconds tick away waiting for a cure. I don’t want to let any more seconds tick away worrying about what comes after this second.

 

Is the human subconscious mind really like a video tape, with a wheel somewhere deep inside our brains slowly spooling away, recording every second of our lives? Does the subconscious even exist?

 

What if it doesn’t? What if most of those 1.1 billion seconds I have lived have not been recorded? What if the human mind is like a DVR set to “Save until space is needed?” What if it erases as it goes, like a computer memory, dumping whole days, weeks, months, years from our lives as we live to make room for the seconds that keep coming? It doesn’t even take sleeping. The very act of living will require the mind to erase memories as it goes, to make room for the detailed memories of the present.

 

Twelve hours ago, I experienced a moment. So much of it is already gone, but then how much did I pay attention to as it happened? What I have left I must record before this day ends and the DVR in my mind begins to erase, and new seconds come, with new worries. I have to freeze time, even if it only for this moment, this second.

 

I arrive at Bodhi’s preschool from CSUN. I punch in the code to open the door. I head for Bodhi’s classroom, the “Two’s” (for age group), exchanging pleasantries with the owner and front office staff, you know the kind of thing we do every time we pass somebody that we know because common decency requires it, the “How are you? Fine. How are you? Fine,” words that are forgotten even before you have finished speaking them. I am already thinking ahead, to future seconds. This one isn’t important. I will have a thousand more like this. I am thinking about Jani. Susan and Jani are here. They come here the mornings that I work, because it is something to keep Jani occupied, to fill the constant need for stimulation that she has, to keep her mind occupied so it doesn’t turn on her, making her feel itchy and provoking her into sticking a sharp foreign object in her ears to alleviate it (because almost everything that can fit into the ear canal is sharp). What will I have to do to keep Jani occupied from now, twelve noon, to two forty, when she goes to school? A little over two hours. An eternity for us because of Jani’s need for engagement every second of those two hours and forty minutes. 9600 seconds. And every one of them must be filled. Even during the drive from one place to another Jani begins to self-injure, for there is not enough to distract her from the psychosis. I talk. I talk about everything and anything. I teach. Much of the time, I am talking to myself. Jani is slipping into her world. I see her start to scratch herself or look for something to stick in her ears. I keep talking, about anything that I hope will engage her. She used to listen. Now whatever is in her head is too much. She can’t. She can’t hang. Suddenly, she will excitedly rub her hands and ask me where we are going, even though she knows. I know she knows. She wants confirmation, constant confirmation. Maybe this dulls whatever she is experiencing inside her head. I end up saying the same thing over and over again. “Where are we going?” “The animal shelter.” Excited rubbing of hands. “Where are we?” “Castaic?” “Are we in Castaic yet?” “Yes.” “Where are we going?” “The shelter?” “Is this Castaic?” “Yes.”

 

This is what I am thinking. I am thinking about the drive to the shelter, which is where I plan to take her. I am thinking about how I will have to give her an exact length of time for travel. I am thinking about how long she will last at the shelter. I am thinking what else I can do if they don’t let us work with the animals. I am thinking how to fill 9600 seconds until she becomes someone’s problem for two hours.

 

I open the door to the “Two’s” room. Jani is serving lunch to the kids. She likes to do this. She panics at the idea that we will not get to Bodhi’s daycare in time to serve lunch.

 

Susan is also helping serve. “There’s Daddy!” she says with great relief, as if I have been gone two weeks instead of two hours. I get it. I do. She’s been burning through the last 9600 seconds, trying to fill everyone of them. She is tired. She wants me to take over with Jani. This has actually been a pretty good morning, but she is still wiped out.

 

I acknowledge her, but I cannot remember what I said. I don’t have time for sympathy. It is my turn now. My 9600 seconds with Jani. Susan can take care of herself. I guess that is my attitude. Susan only needs me to take over with Jani. So often, that is what it feels like. That is why so many marriages crumble under the stress of a child with special needs. You become a staff person to the child, the caretaker, and whatever needs you as an individual have are subsumed under that. In time, you start to forget what you ever needed, why you married each other in the first place, what you used to provide to each other emotionally. It is not hatred or resentment, at least not for me. I just become dead inside, going through the motions of filling 9600 seconds like a machine.

 

Whatever Susan needs, whatever she needs emotionally, is lost under the sheer need for relief from filling the time. In this moment, all she knows is she needs me to take over. Good day or bad, she needs me to take over. There is nothing else, or at least nothing else that we can feel for each other in this moment. This is the hand-off. This is what we do. This is, most of the time, our only interaction.

 

Why do it? Why let Jani dominate our lives like this? Easy. The alternative seems more painful. We could not move on without Jani. Whatever we gained back from sending her away would be swallowed up by the gaping hole she would leave behind in our hearts. It is almost a symbiotic relationship. We cannot live without her. She may be killing us slowly but to lose her would kill us faster.

 

I’ll take the slow death over the fast death any day.

 

I look around for Bodhi. I actually have to focus on every boy in the class to make sure he is not Bodhi. Oh my God. Is that how bad it has become? I can pick Jani out of a crowd of blonde girls in a heartbeat. I could find her in the wilderness if I had to. My eyes are automatically drawn to her. But every time I see Bodhi, I realize, if I let myself realize it, that I forget what he looks like. Not completely. I know he is blond. I know his hair style. I know his approximate weight and height. But Jani’s face is burned into my consciousness. I struggle to recall Bodhi’s. It is almost like every time I see him I am seeing him for the first time, like he is reborn to me every time he comes into my view.

 

It takes me several seconds to ascertain that none of the boys sitting at the tables eating are Bodhi. I look around the classroom. There are no other little boys. “Where’s Bodhi?” I ask. “He’s in speech therapy,” Susan answers.

 

Oh. Okay. So he is fine then. I don’t have to worry about him. I can turn my attention to Jani.

 

Jani is wearing a glove on her right hand, the serving hand. It is a clear plastic glove, not tight like a latex glove, but loose fitting, like she put a sandwich bag over her hand.

 

This strikes me. The glove. It seems so out of place on her. Why? I have to think. It takes me a minute. I know. It seems so… thoughtful, rational. Jani’s level of hygiene ebbs and flows with her psychosis, but even in the best of times we have to remind her to flush the toilet and wash her hands and when she washes her hands it is a split second under water, then moving again. Always moving. The presence of the glove tells me that she was able to slow her mind down enough to actually put it on. Usually she is too impulsive. Hell, she takes off her shoes in public all the time, which scares me because I am terrified she is going to step on something some day. This is not impulsive. Some how she has commanded her mind to actually put the glove on. Even if she was directed to by the teacher, it still says something that she was able to follow this command.

 

The presence of the glove is a sign of normalcy. It is like suddenly getting an image of Jani actually functioning in our world. I find myself thinking of her future, trying to imagine her, in twenty years, working in a career that requires gloves. Doctor? Vet? Hell, cook is fine with me. Anything is fine with me. I realize how much I don’t think about Jani’s future and if she will be able to work a job at all. It’s not that she doesn’t have the energy. Does she have the patience? Can she control her impulses enough?

 

I watch her. She is serving chopped broccoli to the kids. She takes the bowl from the cart and places it on the table near the child. She takes the large serving spoon inside. She gathers up broccoli bits in the spoon and moves it across and down to the child’s plate, slowly, deliberately. A casual action for us, but she is treating the broccoli like it is uranium (another job that requires gloves… and a full radiation suit) or DNA from its source to the petri dish for examination. I can actually see what is going on inside her mind. Her focus. Her attention to the maintaining the spoonful of broccoli level. It can see her forcibly slowing her mind down to the speed necessarily to carry out what for most of us is a thoughtless action. It is nothing like how she eats, where the spoon shovels in food and more gets on her than in her mouth. Here, now, she is not even dumping the broccoli on the plates of the children. She is slowly lowering the spoon, like one would lower a bulldozer’s blade, until it is a half-inch above the plate. Then she slowly rotates her wrist, carefully sliding the broccoli onto the plate. Then she withdraws and moves on to the next child.

 

When she is done, she returns the bowl to the cart. Then turns to me, jumping around and clapping. Her mind has sped up again. She is back to her normal self, normal for her anyway.

 

It is not until now, as I write this, that I realize the massive amount of exertion it must have taken her to so carefully serve the broccoli, pasta in meat sauce, apple sauce, and milk. When she serves the milk, I can see the slight shake of the jug as she pours it into a cup. It is not heavy. The milk is almost gone. She is pouring the last drops, but still her hand is shaking. It is shaking because she is trying to hold it exactly over the middle of the cup of the child.

 

My God. She is fighting her own mind, a mind compelling her to do God knows what, a mind that will not allow her to sit still even for a moment. She is fighting her disease right in front of me. It comes back as soon as she is done serving. But for that moment, those moments, she battles it back. She fights it off long enough to have a moment that the rest of us take for granted every day.

 

This is one of the greatest moments of my life. There have been other moments like this, but I so often miss them because I am worried about the moments to come.

 

I am glad I didn’t miss this one.

 

A little girl comes up to me. She is crying for her mommy. She is inconsolable. A lot of the kids there ask for their mommies every time I come in. They ask me as if all parents come from the same place. They know I am Bodhi’s father and so I must know where their mommy is. Usually I just give them meaningless platitudes about how their mommy will be coming soon, and pat them on the end. But this little girl is not just missing her mommy. She is in pain. Emotional pain.

 

She is coming to me, her nose pouring mucus from continual crying. I start to reach down to pat her head, ready to give another empty phrase of comfort, but this time I stop. I know it will be empty comfort. And this little girl is in pain. I can feel it. I can feel what she feels. Without thinking, I pick her up in my arms and hold her against me. I don’t think I am violating any official rules, or maybe I am since I don’t work here, but in this day and age a man must always think twice with a child not his own. All of us are potential perverts now, all of us with the capacity to molest. But fuck all of that. This child needs me.

 

I hold her and rock her. She stops crying and settles her head down on my shoulder.

“I’ve never seen her bond with a man like that,” Bodhi’s teacher tells me. “Cuz, you know, usually it is women who come in here.”

 

Jani is watching me. “She likes you,” she says, smiling and rubbing her hands together, struggling again to channel that energy.

 

This little girl feels so much like Bodhi in my arms. I have forgotten what Jani felt like.

 

This pierces my heart. I have forgotten. I have forgotten. After all the hell, and daily fight against her schizophrenia and the system, I have forgotten what it felt like to hold her in my arms when she was this age. I can’t remember. All I can remember is the struggle to fill the seconds, to fight for more seconds. I can’t remember holding Jani, even though I know I did.

 

That was another person now. That Michael Schofield died. Those moments are gone and I will never get them back.

 

This is what I lost. I didn’t realize it until now. This is what I lost. I didn’t lose Jani. I lost myself trying to save her. And I lost my memories of who she was prior to the psychosis.

 

Maybe holding that little girl was my way of trying to remember that I was once just a father to a little girl, a little girl like this.

 

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46 comments on “Dead and Gone, but Not Forgotten (Sing)

  1. encouragement
    I saw your story on t.v. and began to follow your blog. My heart was yanked out with this current blog. I have two small children of my own, my girls are 22 months and 3 months. I am not sure how I would cope with a mentally ill child. I want to encourage you to you continue to follow what you believe is best for Jani. I pray that money is provided for the two apartments, and that Christmas is joyful as well. I know that is easier said then done. I will continue to pray for you and Susan as well. I am married and can not fathom the stress and pressure of your dalily life.

    Keep fighting for her. Get through the hard moments to see the good ones. There may not be a cure this side of heaven for Jani, but know that all your efforts are being seen and will make a change for other children. HOpefully we can see improvement for the care that is required by the mental health field for children like Jani. I am actually doing graduate work for school counseling. I will get my PhD in this as well. I hope that I can take the lessons for your story and apply them to my career path. I want to fight for the Janis of the world.

    Hugs to your family,

    Jen

  2. As I look back to when my son was a bit younger I remeber being paralized with grief, fear, sadness, exhaustion. I must say that the older Christian things change. I can’t say they get easier ( I don’t think things will ever be easier) Just so different. I grieve, I am sad, I am scared of what has happened and what is to come, I am tired. But I am functioning again. My husband and I can have a good laugh.. a good cry.. We still haven’t figured out how to have a good date or how to both be emotionionaly in a good place at the same time. We are thankful that when I feel weak he feels strong and when he feels weak I am ready for the fight. I don’t know what would happen if we both felt strong at the same time… things have changed with puberty, experience, time, and there is something I have to remind myself of almost every day… and it helps me. Christian’s reality is not my own… I cannot use my own experiences to empahtize with him. I can’t say.. I can’t imagine what this is like for him.. he is only 5, or my gosh he is only 11 and this has to be horrible for an 11 year old. My kids are 10 years apart and I am now seeing my young girls at the ages that Christian was during his first hospitalizations.. As hard as things were for him then I can see now that my girls are so different. They are so “5”. I don’t know if I can explain what I mean, just that as time has gone by Christian’s hurts seem to be easier on him, and that is a best case scenerio. My hurts… well I am getting used to them.

  3. Empathy
    I am a grandmother who acquired her grandchildren, agees 3 and 5 a year ago. I can related to much of what you are saying here and it brought me to tears. My granddaughter is mentally ill from neglect and abuse but is, thankfully progressing and doing so well. I am so thankful you are able to put into words what I have not been able to – the forgetting, the numbness, the shear tiredness of taking care of someone and the stress it puts on your relationships and the act of putting one foot in front of the other just to get through the next 5 minutes sometimes. You and Susan are heroes in my eyes.

  4. Understandable…
    I honestly do think that a brain is like a computer and has to clear out the files from time to time to make room for new ones. I can’t remember what my 8-year-old daughter was like as a baby and I can barely remember my 3-year-old son’s infancy. While I can remember parts of my childhood and parts of the school years, it’s all spotty.

    My daughter suffers from ADHD, depression and an eating disorder. While it’s not as severe as what you are going through, I feel like I can understand a little bit.

    This last blog brought tears to my eyes. It is so hard to find balance and peace. I think about how nice it would be to just enjoy life and celebrate my kids…but it’s just not that easy to do…then I feel like a heel for shooting my own idea down so fast. The fact is that life is racing by us all. I suppose I just want to continue with mine without making too many mistakes or screwing up my kids too much.

    I am really glad you got to have your moment with Jani at lunch. That was beautiful to read. Thank you for sharing.

  5. Yet again…
    You move me with your words. You make me stop and say a prayer for you guys. You make me feel as if I’m with you guys. I feel proud of Jani for fighting and proud of you and Susan for sticking together to make things as normal as possible for Jani and Bodhi. Don’t give up Michael. Don’t give up Susan.

    Love,
    April

  6. [Content warning: advice you didn’t ask for. ^^]
    Does Jani have the patience to learn to sing? Obviously, normal voice lessons aren’t going to be her thing, but there’s a magic in music, and learning/singing songs might drown out the voices a little.

    …okay, I say that last part based on the fact that I sometimes try to talk over my own “voices” (just feelings of anxiety/embarrassing memories); still, singing along with someone sounds like something that could help hold her in this world, especially when her body has to be idle.

    Keeping you all in my thoughts.

    Note from Michael: Jani loves to sing and will absolutely sing while psychotic to block out the voices. I don’t know about formal lessons. I don’t know if she has the patience. Maybe. It would take a special teacher with a lot of patience and who knew how to make it fun for her.

  7. Cried…
    This was the first blog entry I have read of yours where I actually sobbed… All of your posts touch me, but this one… I don’t know… it just struck me in a different way. I cannot even begin to imagine the struggles you deal with on a daily basis… on an hourly basis! You have much strength, and so does Jani…

    I like the idea of music lessons for January. I know that when I am plagued with an anxiety attack, singing along to the radio or to one of my Glee songs on my iPod makes me relax. It is like the stimulation of singing blocks out the fear. I think you have her in horse therapy, too, right? That has worked wonders for a lot of kids I know with physical and mental issues.

    Bless you, Michael – and Susan, Jani and Bodhi. You are amazing people.

  8. My God. She is fighting her own mind, a mind compelling her to do God knows what, a mind that will not allow her to sit still even for a moment. She is fighting her disease right in front of me. It comes back as soon as she is done serving. But for that moment, those moments, she battles it back. She fights it off long enough to have a moment that the rest of us take for granted every day.

    This is one of the greatest moments of my life.”

    Michael
    We’ve all followed for such a long time the courage you and Susan have shown in the face of so many difficult obstacles. I believed the two of you were the strongest people on earth. But your battles come and go, ebb and flow.

    This simple blog was also for me one of the great moments of my life. To look for the true meaning of courage, we have to look at Jani. The milk, the broccoli, the rest of the food – her battles don’t come and go, they exist every second of her life. How can we compare our little triumphs to what she accomplishes every day, every hour, every one of her seconds?

    You have told us so many times how much work must be done to keep Jani occupied. If she can handle this task herself, will that grow? As she gets older, will these moments linger longer? Does anyone know that you have talked to in the past?

    Note from Michael: I don’t know, Joe. Possibly. It is impossible for know for sure. I think like everything it is 50/50.

  9. I have been following news on Jani ever since I saw a special on her earlier this year. I have been so touched by the love you have Susan have shown for her, because I do not know that I could ever muster up the strength you two have. I’ve never commented on your blogs, but have followed them for some time, I’ve often wished to give you words of encouragement, but I feel at such at loss after reading your posts sometimes, because what could I say to make you feel any better? All I can say is that there are many people in this word that are touched by Jani and her story, and who have hope for her and her future. I for one have learned so much about childhood mental illness from you and beautiful Jani. Please keep us updated on her, I think of her often, her story has truly touched my life. I wish you all the best Michael.

  10. As children get older they reach important milestones in their lives. Jani is not the average child, so consider this one of those incredibly special moments in her life. I also think it’s great that she shared in your compassion for the little girl. Children Jani’s age tend to get jealous when a parent’s attention is drawn to another kid. I think this is also great when you add in Jani’s recent separation anxiety that she’s been feeling when she’s away from you. I’ve been following your blog for quite some time now, and even though she is not my daughter and I have never met her, I can’t help but feel proud of Jani (plus you and Susan) and how far she’s come.

    I do have a question– does Jani ever verbally communicate to you the difficulties that her disease inflicts upon her daily? To what extent does she talk about it? I ask because my cousin has just been diagnosed with schizophrenia, and whenever he’s unable to do something he can’t find the words to express himself (or not just yet, anyway), but instead will suddenly either become very angry or fall flat and all but disappear from us. We take comfort in Jani’s story in that she is able to find happiness each day, and that hopefully soon he will be able to do the same.

    Note from Michael: Kate, I think you said it beautifully. Our greatest goal for those we love afflicted by mental illness is that they can find happiness in every day. As to your question, most of the time Jani is like your cousin. She can be extremely verbal but when the psychosis is at its worst her words seem to fail her. Sometimes she will say the same thing over and over again, stuttering on the word, like she suddenly can’t get out even the simplest phrase. Other times she will abruptly withdraw like your cousin, curling up into a ball and refusing to talk. She doesn’t really like to talk about what she experiences. I see her struggle and wish I could experience with her but I can’t imagine the battles that she fights with her own head. We have gotten to the point where when she feels psychosis coming on she will ask for what she needs, be it medication or a certain song that she likes. She can, sometimes, communicate what she needs to, but she is like your cousin in the sense that expressing whatever it is she experiences is simply too much pressure and she clams up.

  11. You smoke, and yet you have to beg people for rent money? Shame on you.

    Note from Michael: This is too funny. The rent on one apartment is $1300. The cost of one pack of cigarettes is $5. Do the math. Here, I will do it for you. At $5 a pack, it would take 260 packs of cigarettes to equal the rent on one apartment. That’s 5200 cigarettes. I smoke about ten a day most days. So you are absolutely right, anon. If I stop smoking now in 520 days, or almost two years, I will have enough to pay rent on one apartment. Do you think they will let me slide on rent until August 2012?

  12. I wonder about the possibilities if she’s able to maintain that control she exerts over her mind at times. I think about my husband, who has ADHD and dyslexia. He has worked so hard to control his mind (w/o drugs) throughout his life that his work ethic could put most people’s to shame. Plus he’s in a very technical field. Sure, it’s on a different level as far as mental illness, but maybe that vision of her being a doctor or vet isn’t too impossible. 🙂

  13. Oh just hush it, anon. The man isn’t chain smoking imported cigars.

    This was a beautiful blog entry Michael, thank you for sharing it. I am glad you were able to have that moment with Jani. It’s been amazing to watch both you and your family grow, adapt and survive through the course of this blog. Even more amazing is reading back and seeing the ways Jani has grown and her own methods of working with her brain.

    As far as her stuttering, do you think maybe her mind is moving and processing much faster than her mouth is able to express? Or that the psychosis forces her to pronounce it “right” before she can continue? There are young people in my family with psychosis who’ve expressed both thoughts, so I was interested in your take on it.

  14. To Anon!!!
    Shame on you! In your worst nightmare you could not imagine what this family goes thru every single day! You hide behind a computer and place judgement upon people you don’t know! I don’t know what religion you are of if you even have one but in mine we are no one to pass judgement on others and I take comfort in the fact that people like you who truly “don’t get it” will spend an eternity figuring it out!
    As for Michael smoking eh there are worse things you could be doing to ease the tension, every moment of your life is spent worrying about getting to the next. Smoke ’em up Michael if this is 3 minutes worth of calm, me time or anyother feeling you get from it who is some internet moron to judge.
    Wow I can’t believe how something as meaningful and wonderful as Jani,Susan,Bodhi and your own life becomes a place to pick human defects apart pathetic!
    Merry Christmas Michael, to you and your family I hope the next year is filled with many SECONDS of wonderful memories.
    And may your stocking be filled with marlboro’s 😉

    Note from Michael: Thanks, Azure. It didn’t offend me. I actually found it funny. I mean, if that is all people have to attack me on then they must really be scraping the bottom of the barrel.

  15. memories
    You know – it occurs to me that the stress that your family deals with…daily…overshadows the good moments. Even when you have something great to dwell on – you are forced to think about “the flip side”. Jani’s shining moments are awesome…yet…they highlight the bad stuff in some sort of a way. Even the good times are bitter sweet.

    Maybe you have this already…but it occurs to me…that you need a scrapbook of only awesome stuff. From start to finish – fill that thing with the good stuff. Pictures. Written entries. Cute things that she says. You guys deserve awesome family stuff – to be able to look at your best times…and enjoy those without thinking of the contrast.

    Note from Michael: Great idea, Lori. Of course, it requires having the time to do it, which we never have.

  16. I mostly just think it’s funny that you have to beg for money, and yet you waste it.

    I think it’s funny that you “call out” people who tried to treat your daughter, but didn’t have the resources to do it and then you lambaste them for giving up – as if they should care more for your life than their own. And yet you neglect your other child because you don’t have the time to deal with him – the poor child can barely speak, and you didn’t even notice it for so long. I just think it’s funny. I’d burn with shame if I were you, and yet you seem to be so ready to attack everyone else, but everything you do has an excuse. Over and over and over.

    Just funny. Makes me chuckle.

    Note from Michael: Glad it makes you laugh, although if you find this funny you might want to get your own mental health checked. I don’t defend myself from anonymous people. Although you are wrong about people “trying to treat my daughter and not having the resources.” They neither tried and they did indeed have the resources, just not the will. And yes, we should care for others lives more than we do our own. That is the highest calling of a human being. For those in the mental health profession or education, if you won’t put your patients or those under your care in front of your own needs then you shouldn’t be in the field. Go do something else. I am wrestling with that myself, actually. I am starting to feel that my life is compromising my ability to be a good teacher (I am still employed as an instructor, you know). And Bodhi cannot “barely talk.” He is talking quite a lot now, thanks to the early intervention he has received which Jani never got. He gets lots of love.

    Keep trying, Anon. I am not quite sure why you keep wanting to knock me down, but if I am on a pedestal I can assure you it is only in your own mind. I am very much on the ground. Have a good evening, my friend.

  17. eip
    hey, where i live and in most places in the uk and i know in Australia they have a team called early intervention psychosis.. or eip for short..
    its a team like you are describing.. that specilised in psychosis.. and working with young people.. where you see someone when ever you need to you have a social worker who takes you out places they help you out like if you need to go shopping.. theyd go with you if you wanted to to help you feel safer.. they try not to have you put in hospital unless you really need to be they treat you in the community which i think is great. and watch for signs that youre falling back in to psychosis.. and treating you before it comes acute.. and try to stop you needing to be hospitalised.. also they try to keep familys together and know the stress that psychosis can put on familys.. etc.. i think the usa should have something like eip we have here.. ive been with both the child mental health service and adult mental health service.. before i got sent to eip.. theyre great they actually understand
    its funded by the government and part of the nhs.. but it hasnt been around long..

  18. Note from Michael: Great idea, Lori. Of course, it requires having the time to do it, which we never have.

    —————————–
    🙂 I get that…I barely have time and I don’t have to spend my days and nights fighting an “invisible” enemy. It just breaks my heart that you and Susan are forced to temper your higlights with negative.

  19. to anon
    I’m not even quite sure what I’d like to say to you…other than maybe ask, “Why are you posting in this blog?” I am constantly amazed…for example…online mommy forums: people pop into topics and state how they hate this topic or that topic. Guess what. You can choose not to look. You can choose not to help. You; however, choose to start trouble. I guess I just don’t understand why. It seems a bit juvenile and frankly – it rings of low self-esteem to me. Let me tell you something – attempting to knock other down will not raise your self-esteem. Maybe you need a hobby or something.

  20. People like anon who try to put other people down do so to boost their own self confidence. He tries to lecture a person in a very mean way and then kicks a man when hes down. Only people with a very low self esteem take interest in such actions. It will hit you harder in the end anon i promise you that. All the negativity you spread will come back to you one day. Mr schofield is a victim of a health care system that does not fully support his family the way it should.

    Anyhow how is Jani doing now mr Schofield? Is she getting better again? I was so happy for you that she was doing better last months.
    Lots of strength,
    bye Tom

    Note from Michael: Right now, not too bad, but school is about to stop for three weeks so that will be a big break in structure so we shall see. I’m hopeful. I can’t complain at the moment. There are others much worse, which you will see if you go to the Jani Foundation facebook page and http://www.facebook.com/janifoundation.

  21. Agree
    Hi there,

    Firstly, I wholeheartedly commend your continuing patience and commitment to your daughter, and can only imagine what a stressful and tiring job it must be. However, I’m afraid I must agree at least partially with “Anon”.

    If you have financial difficulties, why waste $15-$20 a week (Average 3 1/2 packs a week at 20 cigarettes a pack) on something which might damage your health or kill you so you won’t be around for your family? Not to mention it is really bad for the children (second hand smoke and all that.) If for nothing else, can’t you give up smoking simply because it will give your family a little extra money and will not endanger your or their health?

    I hope it’s okay that I expressed my opinion – and you are more than welcome to ignore me. I do repeat, I have utmost respect for your courage and strength in supporting your daughter.

    xxxx

    Note from Michael: First, it wouldn’t make a significant difference. This is California. It would take me not buying cigarettes for nearly two years to have enough money to pay for one month of the second apartment. Our financial difficulties are too great that simply not smoking would solve them (people also seem to forget I teach full time). Second, I don’t smoke around the kids. But mostly I don’t quit because I am not about to try and deal with this situation while going through withdrawals from cigarettes. People always ask me how I get through this and if I ever take any time for myself. Smoking gets me through. It is my only breaks during the day. If people want to judge me for that and use it as a excuse not to donate, that’s fine. But I am not going to quit smoking. It is part of how I survive (ironically). Without cigarettes, I simply could not live this life.

  22. Just replying to your point, Michael: Please don’t feel you need to get angry or defend yourself – I am not attacking, I am trying only to point out some discrepancies that I find troubling.

    You keep stating that it would take two years not smoking to pay for your apartment’s rent. I actually think that this is not the point – I don’t think anyone is suggesting that you HAVE to use the money to pay the rent. Whilst I understand addictions are hard to beat, I simply think that those who have supported you, given their money and donated, might find it slightly insulting and a bit of a kick in the face to find that you indulge in an unnecessary (and relatively costly) habit. It simply isn’t the behavior of a person short of money.

    I hope I have explained myself a little better.

    Yours respectfully,

    Jv

    Note from Michael: No, you haven’t. If you don’t want to donate money, don’t donate money. But the fact that you would even suggest my quitting smoking given what I am dealing with shows how little you understand. I have smoked for 18 years now, although I quit before Jani was born. When you deal with the life parents like me lead, you do whatever you have to do to get through the day. If I don’t smoke, I lose emotionally stability which is bad for Jani. So yes, it is an attack, it is a stupid criticism, and it shows absolutely zero understanding of what this life is like. Even my doctor accepts my smoking. If you think I am screwing people because I spend ten bucks a week on cigarettes then, well, there are no words to describe how this makes me feel. There are so many more important issues, like you would see at http://www.facebook.com/janifoundation, that smoking is insignificant. Jesus, people give you a little money and they think they fucking own you. Don’t give money, JV. I am sick of dealing with people like you. I have a job. A very good job. I am a college lecturer. I have an advanced degree. Despite Jani needing full time care, I still work. Because of Jani I am unable to work full-time. It is my daughter’s illness that keeps me from making more money. I am not some loser. I am a damn good teacher and I had a very good career before Jani got ill. Even as she did I kept working and it made my family worse and nearly destroyed us all. So fuck off, JV.

    See, I need a smoke right now. It is necessary for me. Also, you can’t say “don’t feel you are being attacked” and then say I “am kicking people in the face.” I studied rhetoric. I know an insult when I see one.

    Another note: I went back over my paypal list and your email is not even on there. You’ve never donated and, thankfully, you don’t have to. This is all you people have? That I smoke? Wow. Keep trying.

  23. My Chemical Romance
    Dear michael,
    I LOVE MY CHEMICAL ROMANCE!!! THAT IS MY FAVORITE BAND EVER!!!!!! THANKS FOR PUTTING IT ON YOUR WEBSITE AS ur SONG!!!!!! O MY GOSH!!!!!!!!! WOWOWOWOWOWOWOWOWOWOWOWOWOW!!!!!!… ok.. i’m done.. (sorry haha)…
    I wish that i could just tell you stuff. I want to ask you a lot of questions, but i don’t want you to get offended. so i’m just going to ask these; why can’t jani stop moving? why must she always be moving?… is moving a stimulation to her?… what?… I have one more question!!! (PLZ ANSWER)… I saw your youtube video… of jani… are you guys going to do more of those? cuz it would be cool if you did… just saying!!! haha… ok… thanks bye bye!!!
    (AND THANKS FOR PUTTING THAT BAND ON YOUR WEBSITE!!!!! THANKS SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO MUCH!!!!! I LOVE THAT SONG SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO MUCH!!!!!! )
    PS: in the video, Gerard Way is trying to save the little girl because she is the key to the future (the kid from yesterday) and she is the only little girl left. She has to survive in order for the human race to not end… It fits with your story and your journey with Jani… KEEP ON ROCKING!!!!! (WITH MY CHEMICAL ROMANCE!!!! HAHA!!! THEY ROCK)

    Note from Michael: I am not offended. I think (and this is just my opinion) that the constant movement, constant activity, keeps the hallucinations and the voices at bay. It like a mental version of restless leg syndrome maybe. She has also said it is painful for her not to move.

    As for why there aren’t any more videos, there are two reasons. In terms of videos of Jani, we are waiting to see if the Discovery Health show “Born Schizophrenic” will be developed into a series, in which case any footage we have shot might be used for that and would be propietary property of the network that ran the show (either TLC or A&E, depending on if either chooses to develop a series). The second reason is that we want videos of other children in psychosis and not in psychosis to show the world that Jani is not alone and that there are other kids out there that just haven’t gotten the media attention. We have asked for submissions but nothing has come in yet.

  24. Please, people, there are much bigger issues here than smoking. I have donated, and will continue to when I am able. And while I don’t smoke, if it helps you, I’d kick in the extra $5. Those of us just trying to survive each day with our unstable children know what it feels like. We are not aiming to make it to age 105 when we won’t be able to take care of them anyway. Rather, we are aiming to make it through each day, maybe even with bit normalcy along the way.

    Note from Michael: Well said, Carin. You said it better than I did. I was not at my best in my response to JV.

  25. I feel sad for Bodhi after reading this post…that’s all.

    Note from Michael: So do I, but I am working on it. He has a lot of support.

  26. i hope so!!!
    that would be the coolest thing if it was made into a series… i wanted to ask you about that before… but i didn’t want to add any more stress to your life… i have a question… would you get money for making that show and letting them film you guys?
    Michael… i would watch that show… but if you do get famous… these kinds of conversations will end… a lot of other people will want to talk to you about jani and ask questions ETC… I like how you were on TV, but your not stuck up and will still answer questions to random people you don’t even know, because you know they care about Jani. If you do get the series… ALOT of people will be coming to this website… you will have ALOT of comments asking questions and stuff and you won’t be able to answer them all. I will miss that… but if you get money for doing the show… its worth it… cuz u need the money.
    I’m thinking out loud right now… thats all… don’t mind me…

    hey… one last thing… u said Jani had “tummy troubles” cuz of her medication… did she gte better or… i mean what happened with that?
    and one more!!! haha… i saw that a really mean dude talked to u on this website about how you told jani about sharks and how they breakl there preys back before they eat them… Why did she not know who you were?… what kinds of medication was she on?
    I’m sorry if you get offended by me asking these questions…. I only mean respect to you, because what you do for Jani is great… I don’t think she’ll understand, until she older what a blessing of a father she has… ok…
    bye bye!!!!!! 🙂

    Note from Michael: Yes, we would get paid. Being on television really doesn’t change your life. We are still who we were before. We still have the same daily struggles in terms of taking care of Jani and Bodhi.

    As to your second question, lately the tummy pain has probably been caused by augmentin because she is getting over a bad ear infection. But before that her stomach pain seemed to come when she was bored or not stimulated, like when riding in the car, so the assumption was it was a tactile hallucination, especially since if I started talking to her about something she enjoyed the stomach pains would magically go away.

    The night she didn’t recognize me they were titrating down on her dose of Thorazine. She had gotten up to 300mg a day which “returned” her. She was sweet and calm. We watched tv together and had a conversation. Then that night she went into EPS and they had to come down on the thorazine. The hope was that a lower dose would still work but within two days she was slipping away again. Today, she is on a much lower dose but she is also on Clozapine.

  27. Series
    It’s wonderful news that Jani’s story might be made into a kind of TV reality/series show. (I don’t know if that’s the correct term.) But it would be great anyway.

    Don’t pay any attention to these JV-types. Nobody owns you. And nobody who donates to Jani’s support thinks that they can own you.

    And no one who knows her story will fault you for having a cig or two every once in a while. Whatever floats your boat, I always say.

    Personally, I go for cheeseburgers, despite my having high BP. 🙂

    Note from Michael: Thanks, Carl 🙂 You are the best, as always. One of these days we need to meet so I meet our “guardian angel.” You are always there when I need you and we have never even met.

  28. guess what!!!
    GUESS WHAT!… I’m only in my second year of high school, but i have decided to become a child psychologist when i grow up… I have decided this because i want to help kids like jani… AND their parents… Reading your blogs and watching your shows has really made me interested in it…

    Plz tell the Schofields that i say thank you very much for telling the world about Jani and helping me find my lot in life!!! 🙂

    they never explained it in the documentary… why does Jani say “i hate you” all the time to her parents and stuff?… who ever is reading this… plz ask the schofields and pass of this message… it takes a lot of courage and determination to do what they are doing and i think EVERYONE can tell that they are fighting everyday to do all they can for jani.

    Note from Michael: Thank you, July. I find it funny that people continue to think that there is anyone behind this website other than me. I have no “people” who read the comments and vet them for me. Just lil ol’ me. As for your question, Jani doesn’t actually say “I hate you” all the time. The Discovery Health show just used that line on as their intro and outro on a repeated loop, I suppose for effect. She has said to me before and to Susan, although not for awhile. Jani will suddenly blurt out that she hates a lot of things. I think she is still learning how to express emotion. People with schizophrenia very much feel emotion but the wires get crossed and it doesn’t come out the way they want it to so the words coming out are not necessarily connected to an emotion. It could to chase away a thought, like shooing away a fly. At least that is my impression. My schizophrenic readers, feel free to correct me if I am wrong.

  29. Happy Holidays 🙂
    wishing you all a blessed, safe, and HAPPY holiday.

    Note from Michael & Family: And to you!

  30. happy christmas
    happy christmas michael!
    i hope santa has brought great gifts for jani and bodhi;)
    is jani out of hospital? i hope she is so you can spend christmas as a family
    i hope the new year goes well!

    Note from Michael: Yes, Jani is out of the hospital at the moment.

  31. Merry Christmas and a happy new year, you truly are an inspiration as a parent who has so much patience and love for their child. Hopefully today and in 2011 you and your family have more good minutes and seconds then bad ones.

  32. plans!!!!?!??!?!?!?
    first of all…. Merry Christmas and happy new year…:) anyways… because you have to constantly be watching Jani… and i know you have another kid named bhodi… I asked my parents about what solution you could find to spend time with bhodi and get a “break” from jani…they said that there has got to be something the state can do or your insurance or something, to where you have a nurse of someone like that come in and play with jani and distract her etc. Bhodi is going to need lots of support in his life… he won’t understand about Jani and her illness until older… PLEASE!!! make sure he doesn’t belittle Jani because he can… I know a family who didn’t tell the youngest kid that the oldest kid has some “problems”… and the youngest belittles the oldest… it breaks my heart to see it… I care so much abut your family and we have never met… I hope someday i’m in California and i get to see you in real life (sorry if this creeps you out… i probably won’t make it to California anyways…)

    to JV….
    did you know… that in the amount of time it took you to type that paragraph… drugs were smuggled … children were killed… and someone probably got shot… so go think about that… see if you want to waste more time typing to Michael about how he shouldn’t smoke… I’m sure there is a much more healthier way to handle your anger other than to be a jack wipe to a person you don’t know… like trying better the community so there isn’t drugs being smuggled, children killed, and people getting shot… Peace

    Note from Michael: I wish your parents were correct but unfortunately no. Neither our insurance nor the state offers any respite care for parents of mentally ill children. I can’t speak for other states but in California this just isn’t offered. It is sometimes for autistic kids but not mentally ill.

    As for your second question, it would be virtually impossible for us not to tell Bodhi what Jani has, given that they live in separate apartments and Bodhi is growing up used to Jani coming over for dinner and then leaving. So he is already aware that our lives are different. But we are obviously not the types to conceal anything so of course we would tell Bodhi. We tell him now but we are not sure if he understands. He certainly loves his sister and loves playing with her (the two apartments have kept him from growing up scared of his sister). Nor is he “normal” either, whatever that means. He has developmental delays and speech delays so it is not like he is “perfect” compared to Jani. In fact, we have reached the point now (after three years of medication) where sometimes Bodhi’s tantrums can seem worse than anything Jani does now. But believe me, Bodhi will be well versed in mental illness. This is why we separated into two apartments. We wanted him to grow up without fear so that he connected his sister with love and not fear and it has worked so far.

  33. ADHD
    I have ADHD and my thoughts run really fast too… like jani… why didn’t the medication work on jani (meds for ADHD)…. I’m not schizophrenic, but i mean… is her mind running fast only in psychosis or… and if it is then meds for ADHD will calm her down won’t they?… im confused

    Note from Michael: Jani’s mind runs really fast all the time. The anti-psychotics slow her impulses down along with the hallucinations and, despite doses that would put a regular adult in a coma, seems like a somewhat hyper kid on 750 mg a day of lithium, 300 mg of Clozaril, and 50mg of Thorazine. All that and she appears a bit hyper. ADHD meds were tried long before she was diagnosed with schizophrenia and had a disasterous effect. They sped her up, working more like they do in adults than in kids, and made her more impulsive. She also can focus when she is not in a psychotic state and is interested in what she is doing, so ADHD was ruled out. But to answer your question in her case ADHD meds make her more psychotic and more impulsive. They have the opposite effect. This is why you generally do not treat someone with a psychotic illness with ADHD meds.

  34. Happy New Year
    Hi Michael,
    I just wanted to write & tell you how lucky Jani is to have you as an advocate for her. I myself, have 2 children on the autism spectrum & know how frustrating not getting answers/help can be. You & your wife are doing an amazing job. I think of your family often. How has Jani been doing over Christmas/New Years? I wish you & your family all the best… keep fighting for her. She is one amazing little girl.

  35. Hi Michael
    Hi Michael:
    I’ve followed your wonderfully out-of-the-box amazing parenting (both of you) for years and have just checked in again, after several months. (I read your Oct. post and hope that you’re doing OK. I just sent a donation.) We are all paying attention to you — all of us. You are helping to model a new way for society to function. The idea that your family, your child has a medical situation that our medical system and culture cannot accommodate in a humanitarian fashion is driven home every time you take the time to explain why you are doing the things that you (logically and rationally) choose to do for your daughter. Rarely are we able to watch people parenting through sickness the way that you do. It seems to me that always before, either mentally sick people were sent away, and that they were almost always behind closed doors, spoken of very little.

    Thank you for speaking about some of the emotions and the emotional connections that are happening for you. And please realize that I, also, although my child is not ill, feel that I have missed things and that time is gone. We all feel these things. One of the recurring themes that I see in your writing, interestingly enough, is how you have (it seems) been almost forced into a “live in the moment” state. Have you ever thought of that? Ironically enough, some people pay lots of money and spend years and years of being able to live in the moment. Whereas you have learned how through torture.

    The living in the now seems to have changed you and your writing (I started reading your blog several years ago). Your description of Jani controlling herself and serving food was exquisitely beautiful. Like a shard.

    Please give your wife a big hug and kiss from the moms who read you, and please give a hug to both of your great kids also.

    Warmly
    Kate

  36. checking in
    Like many others that comment here, I saw your story on Discovery a while back, and I was immediately drawn in by your family’s journey. Unique as it may be, it really speaks to the issues many families experience with all sorts of diseases of the mind, body, and/or spirit. Several people in my family battle addiction of all different shapes and sizes, and it’s so cruel that we can’t help the person who we know is buried deep down in their body somewhere, hiding, or more like trapped underneath all the rubble. You want to shake out the illness, shake out the need to escape into the bottle, the needle, or another world in their mind. Sometimes I envy people who can have a complete disregard for their “reality.” They say “screw it” at some point and just throw all caution and reason to the wind. That seems like freedom, right, but I know too well that they have just built a fortress around them without any clear way out. I only have experience with people I’m supposed to look up to – older brothers, grandparents, mother, father, etc. I figured out that I was on my own and was able to fix my future before it was too late. Now, as a mother, I don’t know how I would be able to handle the same struggles with my own child. People can understand walking away from a parent who’s not being parent-like, but what about a child who is not living the childhood you dreamt up for them? The inherent need to fix and comfort and console is inescapable. Not being able to do so must be maddening in its own right, but I think you do a fantastic job of recognizing the little victories – those are the things that are worth fighting for.

    Sorry for the tangential rambling, but I appreciate the honest account you give of your own struggles and wanted to reach out in some way. We are all battling along, but not all wars are created equal.

  37. Hey, you – yeah, you.
    You’re amazing.

    I have a lot to say, but I’ll try not to inundate you. I a ‘neurotypical’ high school senior – I’ve been a silent spectator – you, Susan, and Jani inspire me – I have cried, laughed, prayed (despite being hardly religious)for you all. I’m affected. I’ve BEEN affected. I’m not going to be silent anymore, because I’m ready to do something about it now. You’ve helped me more than I’ve helped you (this will change).

    But I just want to let you know, you are incredible. And you keep shouting, and we’re hearing you.

    (Also, I know relief doesn’t last long, but if you even have 2 minutes and 46 seconds to spare, I hope this will make you smile. http://www.youtube.com/watch?v=v6iHCFiSqIw )

  38. I’ve finally caught up to the present
    Hi Michael — I’ve been familiar with your family’s story since last year (as many have, I saw “Born Schizophrenic” when it ran on TLC). I methodically have read this blog from past to present and have wanted to comment many times, but I waited until I was as caught up as possible.

    What I want to say right now is this: You’re totally amazing. What you’re doing is the right thing for Jani and for mentally ill children everywhere.

    I think that your writing this blog, and your and Susan’s sacrifices every single day to keep your family together, and your fierce (!) advocacy on behalf of Jani (and by extension all mentally ill children), and your articulating actual concrete ways to make things better — I am pretty damn sure you are changing the world. And by making sure Jani has the best life she possibly can, you are making sure she will grow up and change the world too. It’s easy to see she has amazing potential.

    I know you’ve changed lives for the better, just from reading the comments on this blog. You’ve changed my perspective, for sure. I’m sure countless others who haven’t commented have gotten something from your work as well.

    There is still so much stigma around mental illness (not to mention childhood mental illness) and I have hope that your efforts will end up making a dent. I would like to contribute however I can, starting with my second small donation tonight. And I just want you to know there’s another person in your corner cheering you on.

    Our institutions in this country are broken in a lot of ways. As you’ve chronicled from your own experiences, the pursuit of the almighty dollar has really tainted things like education and health care and journalism, and it takes exceptional people working within and outside the system to get this country back to what it’s supposed to stand for. Like the folks at UCLA, and Dr. Fine, and yourself. And the way you’ve chosen to interpret God’s word in your life makes a lot of sense to me.

    Nobody’s perfect. But faced with the choice, you’ve chosen to fight for what is right for EVERYONE, instead of giving in and taking what seems like the easy way out. I can’t sufficiently express how much I admire that.

  39. Oh, also
    I don’t think you’re “begging,” by the way. You are doing something that has real value that isn’t necessarily valued by society through traditional means (the way, say, teaching a college class is). However, those of us who have sent money — well, I can only speak for myself, but I give because I think there is real value in your work. This is good work you are doing.

    Finally, I was also thinking about the metaphors you’ve used for the way insurance companies only fund mental health to a certain point. I agree that cancer isn’t an ideal one. Maybe it’s like cutting a cast off a broken leg because it hasn’t fully knit in one week.

  40. Best Wishes
    I’ve been following Jani’s Journey for about a year now. I found your blog through Jennifer Wohlenberg’s blog (who I found because I used to like her scrapbooking, but now read because it just touches my heart).

    I also study biochemistry and evolution and how they relate to nutrition (I’m not a doctor, though). I’ve been coming across more and more information in the medical journals about a link between wheat and schizophrenia in a certain subset of schizophrenia patients – it seems mainly ones with the MYO9B gene. It sounds far fetched for sure, but there is hard data and research out there.

    I wanted to give you just one link to a medical doctor I’ve been following who discusses the incidences of wheat consumption and first time schizophrenia hospital visits in various countries over a period of years. It’s quite mind blowing. Some of the evidence is anecdotal, but at the same time, well documented, but other info is pure stats.

    http://nephropal.blogspot.com/search/label/wheat

    Sounds kooky at first glance, yes. But it’s also science based. Does it help in every case – no. But in a subset it does work. And best of all, it’s free. Maybe try removing gluten and/or wheat from your daughter’s diet for just 2 weeks, even 1 week, and see if there is a difference. If not – no harm done. One patient showed major improvement on her 8th day.

    However, I know that Jani is a picky eater and gets so much joy from her food so it is not necessarily an easy thing to try, even for two weeks. I’m slowing weaning my son off of bread and bagels, i.e. making pancakes with almond flour instead of regular flour (really yummy, btw) but it is not easy nor is it always convenient (but he can still have junk food like chips and hot dogs so that helps) – there is a history of depression in my family and I am trying to prevent this in my son.

    So, I know you don’t have time to research and look into these things, but I’ve just been reading so much in the medical journals, science blogs, etc. lately, that I couldn’t help but mention it. I’m sure your doctors would be up on this stuff, though, right?

    P.S. Childhood epilepsy is also being treated with a ketogenic diet now – remission of epilepsy in about a third of the cases – and here it seems to be that the child’s brain needs to run on ketones, not glucose. So perhaps that is the case with the grain-free diet helping schizophrenia as well – maybe it’s because the brain is switching to ketones instead if the carbohydrate is low enough. The best thing is that it seems that after a number of years, the carbohydrate can be re-introduced in the diet slowly. BTW, this has also been shown to reduce severity of symptoms in Alzheimer’s and Parkinson’s as well.

    -Steph

  41. Life Seconds
    Must give us pause, as they say. I’ve already lived out about 92% of those seconds. Which is a startling revelation to most people at my time of life. But enough of that.

    I hear Jani’s now doing algebra. Is that true? It seems to me she’d be a pretty good mathematician if she can stay with it. Quantum physics by the time she’s sixteen, I bet. Anything to keep her voices and visions from pulling her back through the Looking Glass.

  42. Hi
    I saw you in a video on youtube when I was searching mental illness, Im 25 and im starting to her voices its quite scary yet my psychiatrist knows. Next month I will be admitted to my psychiatric hospital to have my medication adjusted and also if there are any side affects I guess im in the right place.

    Funny I seen a idiot saying how your daughter was demon possessed, I guess when you have not formal education and most likely home schooled that is what happens.

    You and your wife are brilliant parents a credit to all those who are parents and a shining example to those who are about to become parents.

  43. Are you ok?
    Hey… I have noticed that you haven’t been writing blogs lately… it makes me nervous when you don’t wright blogs for a long time… it makes me think that Jani has fallen backwards… is everything ok? (or as ok as it will ever be)
    Just checking!!!
    -Anonymous

    Note from Michael: Sorry. I know I haven’t written a blog for awhile. Actually, had she slipped I would have written because this is my release. I haven’t written for a few reasons. One, she has been doing well through what is the hardest time of the year for her and I have been afraid if I blogged I would jinx it. Second, I have been teaching a winter course online at CSUN. Third, I am writing my book because my deadline is very soon.

    Thank you for checking in. I will blog again soon!

  44. I just watched your story on TV and could relate. My story with my daughter who is now 6 had alot of the same behavior as Jani only the behavioral issues ended up being a “reaction”. My daughter was taking a prescription drug named Singulair for allergies. Long story short 3 days after coming off of this medicine she was like a different child. She has been off of the medicine for a little over a year now and while it has been a rough road things are so much better now. I was told that it would probably take the same amount of time to get it out of her system as it did to get it in her system. (she was on in for 4yrs) She occasionally has a meltdown but they are fewer and further in between the longer she is off of it. I just wanted to mention the Singulair because I have seen children misdiagnosed with ADHD and other similar diagnosis that were actually taking singulair and it was the problem. If anybody has a child on Singulair, I urge you to research it and its side effects. I pray little Jani is doing well and I commend your dedication to her and her special needs!

    Note from Michael: Unfortunately, everybody reacts to medications differently. But I was under the impression Singulair was used for asthma. I can find nothing about it being used for treatment of ADHD (although Jani doesn’t have ADHD). But thank you for the warning. In Jani’s case, her behaviors existed long before she was on any medications and in her case they have gotten better on the medications.