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Standing in the Middle

I hate beginnings.

 

It’s always been the hardest part of my writing. A million things have happened. So where do I start? “Start at the beginning.” Okay, but where’s the beginning?

 

The published version of January First (not including the prologue) starts on Jani’s fourth birthday. However, previous drafts started much earlier in time. The very first drafts started before Jani was even born, some as far back as when Susan and I first met. Others started when Susan and I found out she was pregnant with Jani. Others started shortly after her birth in those first hellish months of when she was not sleeping.

 

Where, exactly, do you begin a story? Because whatever point you begin, there was always something earlier. It’s hard to figure out where it all began.

 

This has always been a problem with my writing. I start to tell a narrative and I end up going backward, not forward.

 

With January First, I was contractually obligated to 85,000 words, give or take a thousand. The focus of the story also had to be Jani, not me. That is why the revelation that I shook Jani as an infant in Chapter 30 seems odd. The set up chapter for that is gone. Originally, there was an entire chapter devoted to that, the third chapter of the original draft. Why was it cut? Partly it was to improve the narrative flow. In the original drafts, there was a pretty big jump from Jani’s infancy to the onset of her increasingly odd behavior between 3 and 4. It would have forced the story to jump more than two years between chapters. Second, and I’ll be honest here. There was concern that having such a scene so early in the book would hurt my “likeability.” Which makes me find the reviews that find me unlikeable funny. I was even more unlikeable in earlier drafts.

 

See, I did it again. I went backward, not forward. The paragraph above has nothing to do with trying to write this blog at all, yet there it is, and it will stay there because I don’t have an editor for my blogs.

 

Back to the beginning. I suppose the point of the paragraph about what was cut from the book is that in the end I had to start somewhere, and since it was Jani’s story, it had be, if not the beginning of her life, the beginning of its loss, or the loss of what it might have been, what we have all been working for five years to restore. Because after the not sleeping and the constant need for stimulation, Jani was fine. Jani had a very distinct personality. So the beginning of the book was the beginning of Jani unraveling and, by extension, Susan and myself.

 

I am much better at endings. My two favorite words to write are “The End.” We don’t write like Greek Tragedies. Modern narratives, no matter how awful, have to end with a sense of hope. Very very few writers ever defy that narrative style. You have to give the reader a glimpse of the light at the end of the tunnel. You have to make them feel that even if you are not at the summit yet, you can see it and you know that, one day, you will get there.

 

And that is not a trick or a lie. As the writer, you have to believe that. If you didn’t, you couldn’t tell the story. Just like the reader, the writer has to feel that s/he has a place to go. You can’t take the reader to hell unless you are going to show them the way out. And you can’t go to hell unless you believe, on some level, that you will come back.

 

I guess that is my long winded introduction to the point of this blog.

 

I have to go to hell again.

 

Bodhi.

 

My response to the question, “How is Bodhi doing?” have ranged from silent to evasive. This may seem odd considering that I have been on TV talking about Jani’s schizophrenia, but if you’ve read the book, you know that me being silent or evasive or deflecting the question is not inconsistent with how I was with Jani. I wrote the book in present tense to show how I thought and felt in the moment with Jani. I guess I didn’t do a very good job of conveying that those aren’t my feelings anymore.

 

I do get asked if Bodhi has schizophrenia. This is easy to answer. “No.” But think about the question. You are not asking me if I BELIEVE or FEEL or THINK Bodhi has schizophrenia. You are asking me if he has it. No, he has no diagnosis of schizophrenia, so I can say “No” and leave it at that. I’m not lying or being evasive because you just asked me if he has it, which I interpret to mean, “Does he have the diagnosis?” No.

 

So why does the question keep coming up?

 

There’s a few reasons:

 

  1. Although not conclusively proven, there is a strong suggestion that there is a genetic component to schizophrenia. When it first appears, and because its onset is rather slow, a child with schizophrenia appears to be “patient zero,” which is why the media keeps advertising Jani’s story as “one of the youngest people ever to be diagnosed with schizophrenia.” Although this is not true. It’s only true in the last two decades. It’s new to the media. It is new to psychiatrists who went through med school in the gap between the closure of the state mental hospitals in the 70s and 80s and the last decade. You also have to remember that the birth rate hit in the United States hit its nadir in the mid-1970s, gradually increasing again through the 1980s and 90s as social mores about children and decreasing acceptance/use of abortion changed. The 1970s were the anathema of the “kid-centered” culture that would rise in middle-class America beginning in 1982. Oddly enough, the 2000s have seen a return of the “bad seed” portrayal of children in horror films that we saw in the 1970s and movies tend to represent a culture’s underlying fears.

 

But there is another reason why your child is not really “patient zero.” You don’t think about mental illness, unless you have been diagnosed with a particular severe kind. What to Expect When You’re Expecting does not have a chapter on possible mental illnesses your child might have. In baby care classes, they teach you how to resuscitate your baby with infant CPR, not what do when your child begins a radical personality change. You think about banking your baby’s cord blood with hope that, God forbid, your child ever develops leukemia, you have stem cells in cold storage. You NEVER EVER think about serious mental illness. You don’t even know what the hell schizophrenia is. Okay, you know that’s probably what the bag lady raving to herself on the street corner has, but you never think about how she got there. You never go back to that woman’s beginning. You never realize that at one point in her life she was normal. You don’t think about the fact that this woman was once a fully functional human being. She is just who she is now. There is no backstory and if it crosses your mind at all, you chalk it up to bad circumstances (abuse, drug addiction, etc).

 

Of course, growing up you heard whispers about certain family members, the strange aunt or uncle or cousin you never knew. When you ask what happened to them, your parents or grandparents largely brush the question off. Only after your child’s symptoms intensify and you are crying to them on the phone about how you have no idea what is happening to your child, does a family member say, “You know, Uncle Joe used to act like that.”

 

WHY THE FUCK DIDN’T YOU TELL ME THIS EARLIER??!!!! Is what you want to scream.

 

And slowly, gradually, you learn the truth: that your families are riddled with mentally ill individuals. Some of them eventually got a diagnosis and got shut away in an institution. Some never got diagnosed but still got shut away in an institution. But because this doesn’t come up in conversation during Thanksgiving, because these distant family members were gone, either to institutions, death, or narcotics and alcohol, before you were born, you never knew. You never knew that your “crazy” great uncle or second cousin really was crazy and, if you press your hazy memoried parents, actually had a diagnosis.

 

I don’t know if this holds true in cultures that still have extended families but one of the great failures of the Western nuclear family is it destroyed family history. I know everyone in my family who has died of heart failure or cancer. Schizophrenia? Bipolar? Not so much. And those who can answer those questions are either dead, out of touch because we moved to America, or their memory is hazy because the last time they saw their “crazy” or “lunatic” cousin was fifty fucking years ago.

 

So your child is a puzzle in a family history with most of the puzzle pieces missing.

 

  1. But in that hazy history, you learn that the crazy great uncle was the sister of your “odd” grandmother. Why was she odd? Because she would sit the corner and stare at nothing. Oh, and it turns out she was in and out of mental hospitals and received ECT for twenty years.

 

What?!!!

 

But I did it too. I spent most of my teens and twenties referring to my mother as “crazy.” It wasn’t until Jani was diagnosed with psychosis that I began to look back and see that maybe my mother chasing after me with a butcher knife when I was twelve because she thought I was her FATHER was more than just her idiosyncrasies. Oh, so that’s what a delusion is. I always wondered how she could be so convinced my father was a mafia hitman.

 

And once you start looking for it, you see it everywhere. Okay, so maybe that explains why my Uncle Michael, my namesake, was a violent drunk whose wife left with the kids. Maybe that explains why my Uncle David was a raging alcoholic whose wife and kids also left him and whom I would frankly be shocked if he is still alive. Maybe that explains why all my uncles were just a little “off.” They weren’t bad guys. I loved them. They were fun. But as I grew older, I heard increasingly disturbing stories about them. But because we moved to America and my parents divorced only a few years later and my mother broke off all contact with me, I never saw any of them again.

 

  1. Every single family that I know that has a child with a serious mental illness and has more than one child has more than one chld with a serious mental illness. Not exactly the same mental illnesses. Not exactly the same symptoms. But if you got one, you’ve likely got another. Some even have three. Some have two with the third one apparently spared.

 

For now…

 

So why did the producers of “Born Schizophrenic: Jani’s Next Chapter” ask about Bodhi’s mental health? Why did “Mornings” on Channel 9 in Australia mention it?

 

Is it because of this probability of genetics?

 

No, not really.

 

It’s because they see it with their own two eyes. You see four minutes of footage on TV but that four minutes took an entire day to shoot. You see 44 minutes of footage with “Born Schizophrenic: Jani’s Next Chapter” but the shoot took three months. The basic rule is that for every minute of footage, one entire hour is left on the cutting room floor. The “20/20” we did back in 2010? Our segment was maybe 16 minutes total. You want to know how much footage they shot? 1500 hours of video.

 

My point is that what you see on camera is not what the producers and the film crew saw. You see the footage they chose to use to fit the story they were trying to tell and within their time constraints. You see a fraction of the total footage. There is enough footage on Jani and all of us to fill an entire channel 24 hours a day for at least a few years.

 

And every time, they have to re-introduce the story, which burns time and why they tend to use the same footage over and over again. And they have to tell the story, hitting the major points, engaging the audience who has never heard of Jani, and tell it coherently and get out in time for the next segment on Khloe Kardashian.

 

And what is more dramatic: show ten minutes of Bodhi terrified by something we can’t see, desperately trying to tell us something but it makes no sense, repeating the same thing over and over again or show a quick two second clip of Bodhi screaming and pointing out the car window and then ask the father with the schizophrenic daughter if he thinks his son also has schizophrenia?

 

It doesn’t help that Susan will tell anyone who will listen she thinks Bodhi has schizophrenia.

 

“Michael, your wife has made it pretty clear she believes Bodhi has schizophrenia. Do you feel the same way?”

 

“Ah…. Can we talk again about the time I snapped and shook Jani when she wouldn’t sleep?”

 

I have no problem talking about all the mistakes I have made. I have no problem talking about the shaking. I did it. I own it. Do I think it caused Jani’s illness? No. I have no problem talking about when I was accused of sexual abuse. I actually do talk at length about these things but the media leaves it out because none of that is as interesting as whether Bodhi might have what Jani has.

 

So what goes through my mind when I am asked that question?

 

“No, of course not. But I have a history of denial. For every person who criticizes me for ‘pushing’ for a diagnosis of schizophrenia for Jani, there are a hundred more who criticize me for not getting help for Jani sooner, for being so convinced her symptoms were just a product of her genius that I ignored what is plain as day to them in the book.”

“Susan comes off like she is nuts, but she was also right. She always has been. She listened to Jani, really listened to her, long before I did, and she continues to listen to her better today than I do.”

 

“I know damn well this isn’t ‘mimicking’ because Bodhi is too young to remember Jani at her worst and I don’t buy the Jungian subconscious bullshit that things that happened to you that you don’t remember affect your life. The two apartments, Susan’s idea again, protected Bodhi from Jani until she was relatively stable. That, and I believe kids mimic psychosis about as well as you can get down on your hands and knees and pretend to be a horse well enough that I might actually confuse you with a real horse and try to ride you.”

 

“I see my son suffering. He is scared. Terrified. Jani was never scared like that. Jani was never scared of anything. So it can’t be the same thing.”

 

“Bodhi isn’t violent. He will sometimes bite or hit but he is panicked. Jani was never panicked. There was no emotion.”

 

“But whatever this is is eating away at his personality, just like Jani. The happy Bodhi is disappearing under this all encompassing terror.”

 

“My son is suffering and I can’t fix it and neither can the medications nor the ABA therapy.”

 

“I cannot go inside Bodhi’s head and even worse he cannot tell me what he is experiencing. Once again, whatever is going on has made me an outsider. Is that my fault because I pretty much ignored him due to Jani in his early years? No, because he is same way with Susan and Susan never ignored his emotional needs.”

 

“Something is happening to Bodhi. Something is going wrong. And it is getting worse.”

 

Editing cuts out my long pause between the question and my answer, which in “Born Schizophrenic: Jani’s Next Chapter” was, “It doesn’t matter. Whatever he has, we’ll deal with it.”

 

Except that was bravado. That was seven months ago. Bodhi was, I could say then, doing okay.

 

He’s not doing okay anymore.

 

So what is the answer to the question, Michael? Do you think Bodhi has schizophenia?

 

“I don’t know.”

 

Yes, you do. You just don’t want to admit it because then it makes it real. How long are you going to wait?

 

“Wait for what? There is a protocol that must be followed. Every child is unique. We can’t just jump to schizophrenia because of his sister.”

 

That’s not an answer. Several times now you have saved him from opening the oven while it was on. Didn’t Susan’s “crazy” uncle die from an unexplained death related to an oven?

 

“What the fuck do you want me to say? Is there something wrong? Yes, there is something wrong. But this could still just be autism.”

 

Just be autism? Since when did autism become better than schizophrenia?

 

“Psychosis.”

 

Whatever term makes you feel better. Even if it is autism, how is that better? Bodhi is still isolated from his peers, just like Jani.

 

“Autism can be treated.”

 

Oh? Really? How is that ABA therapy working out so far?

 

“He’s still young and he is not as verbal as Jani.”

 

Yes, he is. You just don’t want to listen.

 

“I can’t do this again. Whatever road he is on, it doesn’t lead anywhere good. I can’t do it again. I can’t go back to hell!”

 

So that’s what it is then.

 

“Yes! Alright! You happy?! I can’t do it again. I’m older now. I don’t have the energy.”

 

What did you say to people who wrote on the internet that one day Bodhi will hate you for neglecting him?

 

“What?”

 

What did you say to them?

 

 

 

 

“I said that if that ever happened, I would tell him had the situation been reversed, I would have done the same for him.”

 

And now it is.

 

“No, it isn’t. Jani’s stability is still fragile. Moment by moment. It’s not even good days and bad days. It is good moments and bad moments.”

 

But she is getting better.

 

“And I am barely hanging on.”

 

Bodhi will get better too. You are scared of going back to hell. You’ve already been there once and you and Susan brought everybody back out.

 

“I can’t do it again.”

 

You don’t have a choice. You made a promise to Bodhi in the days when Jani was very sick. Now you have to follow through. Now, one more time: Do you believe Bodhi has schizophrenia?

 

“I can’t answer. I won’t answer.”

 

So eager to diagnose Jani but you lose your balls with Bodhi. How does the name change anything? That is what you are always saying. You are a fraud. You say the label helps but you refuse to label him.

 

“I will say what I have said before. Something is very wrong.”

 

That’s what you said about Jani, too.

 

“THEY ARE NOT THE SAME.”

 

But that is what you wanted. You say it in your book. You wanted a child who would “get” Jani.

 

“But that was before I knew she was mentally ill!”

 

And who says God doesn’t listen.

 

“I hate beginnings.”

 

Everything is a beginning.

 

 

Jani at a Halloween party at her school. I have to face facts. She is growing up.

 

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38 comments on “Standing in the Middle

  1. Message to Jani Boosters
    Attn Jani Boosters. Rent time has come up, and the Schofields are in need of some assistance. I understand about $1000 will cover the rent. I donated $100. Please, if you care for Jani as much as I do (and I know you all do), please donate if you can. Jani simply must have the stability of the current apartment for her sense of security. Any move might traumatize her. So if you can donate, please do. Thanx to all.

    Note from Michael: Thank you, Carl, for doing what I lack the courage to do right now: ask for help.

  2. only to say
    Hi Michael
    I follow you since I saw the story of Jani on youtube and started searching news about her and your family. So you have a supporter also in Italy (and maybe more than one!). I write only to say that I can feel your pain and understand it. Me too have some “problems”, not so hard anyway, except when I have my, how can I call them?, dark moments…let’s call it depression. I have been on meds, now I’m trying to walk on my foots, but I would take meds again if needed. So, I can understand your pain, feel it as it was mine, really. don’t give up, don’t feel you have something to be forgiven, you’re doing incredible things for both of your children, for your family and for a lot of people, including me. don’t give up.
    chiara
    ps: forgive my english, I would have liked to tell you more but here in Italy we are so bad with it. a big hug.

    Note from Michael: Thank you, Chaira. I know that black depression myself, only too well.

  3. Cute costume!
    What is Jani’s costume? From the picture she looks like a Greek statue. Very cute!

    Note from Michael: She was the singer Florence Welch from the band “Florence and the Machine.”

  4. interesting person
    I had seen this dishevelled man carrying all of his old suitcases in a department store. I thought he was a bum. I remember being told that this so called ‘bum’ used to be a brilliant professor, before he developed a mental illness.

  5. Genetic component of schizophrenia
    Hello there Michael

    I was just lighting the fire with The Saturday Age, August 25th. At first I was astounded that this was the first time I had read anything vaguely similar to my nearly 25 year old son – the not sleeping at all, the exhaustion, his early walking and talking, the doctor saying “just more active than other babies”, making meals at two years old, writing poetry by three. Learning to count and talk Te Reo (NZ Maori) at four.

    Then as I read on further, I just felt I must ask if you had read any of Dr Chris Reading’s work (now deceased). He was an Australian orthomolecular psychiatrist and wrote a life changing book for our family called “Trace Your Genes to Health”. I may be completely wrong, but if you have not already read it, this may give you some more clues to the genetic component of schizophrenia.

    Another doctor’s work came our way, completely disconnected from Dr Reading’s. The doctor’s name is Dr Nathasha Campbell-McBride “GAPS – Gut and Psychology Syndrome”.

    This also was mind and eye opening, and both these books have a similar outcome for our family, and although it took me a long time to accept some of the discoveries, there was definitely something in there worth cogitating on. Well, it was for me.

    Thank you for sharing your family’s journey. I am humbled by your ability to survive as a family, and the creative ways you have found to achieve that!

    With warm thoughts
    Fiona

  6. Bodhi
    Thank you for writing about Bodhi. I was one of the ones asking about him. I am drawn to something about your son and even though I don’t know any of you personally, you have all touched my heart for several years.

    Your blog entry was hard to read and I have no doubt it was harder to write and harder still to live.

    I know that you and Susan and Jani have lots of people who are rooting for you. I am too. But I especially root for Bodhi. I am so sad that he is not doing well and is scared. Honestly, that breaks my heart.

    God bless little Bodhi. I know you guys will do great things with him and for him, just as you do for Jani. You’ll find it in you to do what he needs because you will dig deep and you love him.

    I’ll be cheering for him every step of the day. Please keep sharing about Bodhi.

    Note from Michael: I will. This blog was about me coming to terms with the fact that not only does Bodhi have his own story, but that he always did. It weighs heavily on me.

  7. I don’t know how anyone could have found you unlikable in the book. In my opinion, you are the epitome of the true love a father should have for his daughter. Nothing but admiration and respect for you.

    Any details on how I can donate to help? I saw from your FB page that rent is covered now, but I’m sure it can go towards other bills.

    Note from Michael: Thank you, Naz. Yes, rent is covered. Any donations can be made via paypal.com to donations@janisjourney.org.

  8. I understand…
    I’m a long time follower and felt I needed to write you tonight. I was drawn to your post today because it struck close to home. I have an 11 year old son that has bipolar disorder. After years and many challenges, we have found stability (for the most part). We felt like we were finally able to pick up the pieces and start to be the family we always wanted to be.

    But our youngest son, now 7 years old, has his first psychiatrist appointment later this month. We tried to blame his behavior on him mimicking his oldest brother, but like you, he was too young during the worst times. We thought it may be Post Traumatic Stress Disorder from his exposure to his brother’s symptoms, but we are starting to come to terms that he too has an illness.

    He has recently shared that he hears voices talking to him, “strangers”. They laugh at him a lot and call him bad names. The also tell him to do bad stuff and they scare him. Right now the doctors think it is related to an anxiety disorder, but like all things in mental illness, we don’t know where this will lead.

    I’ve been processing so many feelings over this. First, I’m angry! I don’t want to go through the hell again. Like you, we just got out. I feel like we already paid our dues, it feels unfair to have this happen to a second child.

    I feel sad, because I’m watching another child disappear into a mental illness. The little boy who use to dance with me now hides when the music plays. His fear is taking over his life and his joy has vanished.

    I also feel dread for the criticism that may follow, “That mother has 2 of her children on meds! It must be the parents that are the problem!”

    Some would think that having gone through it with one child, it’s easier the second time around. So far, that hasn’t been the case for me, in fact it’s the opposite. I don’t have the optimism or energy I use to have. School systems are tired of me advocating for my child, support systems are burned out. I know through experience now that the treatments can be just as difficult as the illness. I also know that answers are rare to come and most of the journey is in the dark—slamming your shins into the furniture.

    I feel so tired, so very tired….

    I understand your post more than I ever wanted to.
    Mama Bear

    Note from Michael: I know exactly how you feel. All of it. Thank you for sharing. You made me feel better to know I am not alone (even though logically I know I am not). It’s still nice to know.

  9. This study was done on adults but you still might find it worthwhile. http://psychcentral.com/news/2012/11/02/antipsychotics-boost-life-expectancy-of-those-with-schizophrenia/47056.html

    I picked up the book at the library today. I’m relatively lucky in that medicare/medicaid cover my psych care pretty well. I just looked knowingly when you go to the part about insurance denying hospital stays. Sadly the only hospital that has ever really helped me (and one of very few equipped to deal with my primary diagnosis) is out of state. My medicare days are gone as you only get so many in a lifetime, 180 I think, so its no longer an option for me. I don’t get why psych stays are lifetime limited but medical stays aren’t. It shouldn’t be legal. Nor should it be legal that medicaid is only accepted in the state you live in.

    And like Jani and so many others I have also had to leave hospitals when I wasn’t ready to do so because insurance/doctors who didn’t know me decided it wasn’t needed. One time I wasn’t home two days and landed back in the hospital which just cost them more money in the long run. Idiots.

    I am one of two children. I have three mental illnesses, of which two were definitely brought on due to abuse. The third, bipolar disorder, does have a genetic component but the abuse may have been the kindling to light that fire. I’ll never know. My sister has no illnesses but wasn’t abused either. I guess its a toss up.

    Note from Michael: It’s not supposed to be legal. One of the things that “ObamaCare” does is eliminate lifetime limits on care. We have a great private online support group for adults with MI on Facebook. If you are interested or if I can be of any help fighting hospitals/insurance companies for you(I’m pretty good at it by now) email me at michaeljohnschofield@me.com.

  10. I just finished the book. You did have to leave a lot out, as you wrote here when you were writing it. I was on clozapine, only 12.5mg, for a year and it knocked me out so all I did was eat and sleep. Most adults are on so much more than that but I am very sensitive to medication. I gained nearly 100 pounds in a year before I refused to take it anymore. It didn’t work for me anyhow. Jani isn’t lucky to have schizophrenia but she *is* lucky, as is Bodhi, to have two parents fighting for her. I sense you are tired but you haven’t given up and that is incredible. So many parents do give up.

    Note from Michael: We are lucky in many ways. We are lucky that clozapine works for Jani although yes her appetite is increasing.

  11. Hello. I live in Australia. Have heard about.your wonderful. family. Just write as if u are being inerviewed. keep your chin up… praying for you all

    ive had a friend who used toi have szciophrenia. She is healed from it. I soo wish i cld meet you. all. Can i make a dontation??

    Note from Michael: Hi Olivia. Donations can be made via paypal.com to donations@janisjourney.org. Can I ask how your friend was “cured” from schizophrenia? I ask because I am skeptical of “cures.”

  12. Michael, your blog
    your blog has been such an inspiration. I’ve followed up on the story on you and Jani and the others for some time now, and I always find your blog strangely comforting to read, in a way only staring up at the stars would do.
    I have so many things I would like to tell you, but I’m too cowardly to do so in a public forum. Do you have an e-mail I could send you a letter to?

    Your blog has inspired me to start writing again, and despite having been a blogger for years, I decided to make a blog about the world inside my head. When I heard about Jani’s Eighty on television/youtube, I felt inspired to tell the world about mine, my “Eighty”.
    I’ve been a blogger for some time now, but I recently started a blog nobody in my inner circles know about, so I could write honestly about my mentality without feeling judged.

    I don’t expect you to have the time nor energy, but if you ever feel like reading, click my name or check this: [url]http://batshitcray.wordpress.com/2012/11/04/introducing-mia/[/url]
    The link will send you to the post about my other persona or invisible friend, and clicking my name will send you to the main page. There’s not much yet, but I have so many things I want to post there, so I’m sure there’ll be much more in a few day’s time.

  13. Hey Michael Miss you guys
    Hey Michael I’ve been out of touch lately hiding because I’m sick again. Mother isn’t keeping her end of this and bringing my meds. that’s why things have been quiet on FB as far as me wanting to return home to the group.

    You Susan Jani and Bohdi remain in my heart thoughts and prayers. After this blog I worry is everyone ok?

    Tell Jenny I’m sorry about her loss and Noel I’m alright.

    Give winter angel and her brother a big hug from he if you can.

    Let me know if everything’s alright.

    I was going to do an Audio of me reciting the poem for you guys but I lost my copy of the poem do you or RObin still have it?

    lots of love and hugs

    Cammy

    Note from Michael: I am sure it is still on my page somewhere. It should also be in one of the comments on a previous blog.

  14. In regards to Olivia’s comment about her “healed” friend: According to stats about 25% of adults diagnosed with schizophrenia are fully recovered withing two years and go on to never have any more symptoms. Maybe that’s what Olivia was referring to. These people are not cured by any kind of “cure” but recover on their own. I personally suspect that those who claim to have been cured by various miracle cures were actually just one of these 25%.

  15. I Comend you, in all you are going through….
    Hello, had to write to tell u, you are a wonderful dad, and as hard as it is, your daughter an family is an inspiration, that shows the LOVE of a parent, that no matter what, I don’t think u will leave your son my battle dieing will repository

  16. Thank you
    I can’t tell you how much your blog has meant to me. I was diagnosed Bipolar in 2010, but I’ve been having symptoms of mental illness since I was a bit younger than Jani is now. I can relate somewhat to your struggles and often have issues dealing with the unfairness of it all. I’m 27 now, working, neither manic nor depressed. But I feel like there is a cloud off in the horizon all the time and I know my symptoms will come back. Sometimes you just want to give up.
    Your blog gives me hope. Keep hanging on.

    Note from Michael: Thank you, Rachel. I know about that cloud off on the horizon. I can relate.


  17. I also wanted to add that I lived in the UK from the time I was 13 til 16. It was such a struggle to get my medication and I didn’t feel that my therapist was at all sympathetic to my situation. She suggested it was ‘all in my head.’ Which it is, in a way, but not how she meant. I love England but my experiences with her certainly left a bad taste in my mouth.

    Note from Michael: It is similar in Australia. British cultural views of mental illness make it difficult for those under 18 to get help.

  18. Thank you!
    Dear Michael, I have just finished your book and have to somehow express my gratitude for writing your story. I have a sister who has manic depression. She is now in doing better with the right meds, but took years to get there. We grew up as teens in the 80’s and nobody knew what the hell we were going through as noone understood it (including me). She tried suicide 3 times that I am aware of as my parents tried to shun me from all this. She lost her children to foster care and we raised them but the after effects and damage of this are still there for her, as her sons do not undertand the disease. I am going to purchase your book and offer it to them to see if they can understand how a mental illness affects a person and family. You have no idea how you have helped me see mental illness now and understand what my sister has gone through. I now know that is was out of her control, I could not see that then. It is never really talked about in my family and that was so hard, so reading and learning from your book is invaluable to me. Thank you from the bottom of my heart Micheal and may you and your family always stay strong and find peace in your lives.

  19. I just read your blog and it makes me very humble for what I deal with compared to what you all are dealing with. In a way it grounds me back to reality and makes me realize what is really important in life. I am in the middle of my day of appts and really need this- thank you, thank you so much. I read the first comment and saw that rent money was needed. I really would like to donate, but do not know how- as I do not have fb. I am very passionate about this and would like to donate every other week when I get pd. please let me know as I realllyyyy want to help!

    Note from Michael: And there are plenty of people who humble me with what they are going through. Jani is pretty stable right now. There are a lot of families out there in our support groups dealing with much worse. Thank you for offering to donate. We can take donations via paypal (www.paypal.com) to donations@janisjourney.org.

  20. Thank you!
    Michael,
    Thank you so much for writing the book, January First. You are an incredible father and I really appreciate you sharing your story with everyone. I am the mother of two bi-polar children, and you have helped me feel “not so alone”. I will keep you and your family in my prayers. I know what it is like to struggle with medical bills where your basic needs are almost impossible to keep up with. We don’t have much ourselves, but I will make a small donation through paypal. Those whose lives are touched by mental illness in any way are family. Bless you and your family.

    Note from Michael: Kim, are you aware of our private online support groups for parents of MI kids? We have two and they are both great. One is on Yahoo and one is on Facebook. Both are hidden and are filled with parents just like yourself. If you are interested you can email me at michaeljohnschofield@me.com or contact me via Facebook at http://www.facebook.com/janifoundation.

  21. Jani’s amazing
    I have been following the story of Jani for quite a long time now. She is an amazing and beautiful young lady! You must be so proud of your wonderful family. I am a special education teacher and have always worked with children who have severe disorders. I would have loved to be a part of Jani’s life journey. Id would love to know how things are going now. I know you must be incredibly busy, but please let me know how things are going. I am always available if you ever want to talk or ask me anything. It would be an honor to be a part of your team 🙂

  22. I just read your posts about little Bodhi and my heart aches for your family. As I said in my past post, I have been an Intervention Specialist for many years, focusing my attention on severe behavior disorders. Mostly autism as well as schizophrenia in young children. Please feel free to contact me any time. I would like to help in any way I can. You have an incredible family and I have no doubt that you will do what needs to be done to allow your children to reach their full potential. I would be truly honored to offer you any help, suggestions, anything at all that I can give.
    clkolarik7074@att.net

  23. Bodhi and schizophrenia
    I was one of the people who asked you about Bodhi having schizophrenia, not because of the genetic probability but because of things your wife has said. I’ve never met Bodhi and know very little about him so naturally I can’t say if he has schizophrenia or not. Time will tell, I guess. But some of the things your wife said made me wonder if the belief that he has schizophrenia is reasonable or not because, based on some of her comments, I wonder how well she really understands what schizophrenia and psychosis is.
    For example she has said that the 9-11 hijackers were mentally ill and psychotic when they flew into the buildings because, I guess, it’s such a crazy thing to do. I find it highly unlikely that any of the hijackers were psychotic. With such an intricate and well planned plan that went on for a long time and the precise execution of that plan the last thing you want is to have someone with psychosis involved. People with psychosis aren’t lucid and reliable enough and I would think that if you are familiar with psychosis you would know that.
    Susan also said that the man that kidnapped and murdered that little girl a few weeks ago had a thought disorder because thinking about kidnapping and killing little girls is not normal thinking. It’s definitely not normal thinking but having abnormal thoughts like these is not what a thought disorder is, at all. But what made me react the most was your wife’s comment that Bodhi is a more typical schizophrenic than Jani because he’s afraid of his hallucinations. She also thought, for the same reason, that Bodhi is a paranoid schizophrenic. But being afraid of visual hallucinations is not what paranoid schizophrenia is. In fact most paranoid schizophrenics don’t have visual hallucinations at all. Even among people with regular schizophrenia only a minority have VH so being afraid of visions does definitely not make you a typical schizophrenic. There is much more to schizophrenia than that. So if this is what Susan thinks psychosis, thought disorder and schizophrenia is I have to wonder how accurate her determination that Bodhi is schizophrenic is.
    There is definitely something wrong with Bodhi but there are so many things that can be wrong and I hope you don’t assume he has schizophrenia and treat him accordingly just yet.

    Note from Michael: I generally agree. My only dispute would be that I don’t agree that those with psychosis or disordered thinking are not capable of intricate plans. But yes, your question was part of what drove me to write this blog and I would hope that I got across that I am unsure as to Bodhi’s eventual diagnosis.

  24. thank you
    hi my name is nakita i have been watching the stories about your daughter it almost simular to what i have i have schizephrebia also i am in the hospital right this is my fourth hospital thank you sharing your story

  25. Amazing..
    Last night, I was bored and decided to watch some videos.. I eventually came upon one about Jani. From there I stayed up hours and hours watching every single video about Jani I could find. I have heard of this illness before, but this gave me more of a view on it. I’m only 11, turning 12 on the 29th of this month but I am much wiser and just all around different from most kids my age. This story got me thinking.. I should be grateful. I’m so damn lucky I wasn’t born with any illness. But the one thing that I thought about this story was how strong of a girl Jani is.. How she is able to have friends that understand her. How she deals with the pain of voices telling her to jump off buildings. (And she has FANTASTIC taste in music.:) Haha). So please.. Tell Jani I said to stay strong. She’s an amazing,brave,beautiful,strong girl.

    Note from Michael: Thank you, Dina. I will tell her that. She is very strong. She is strongest person I know.

  26. my 12 year old daughter with Schizo Effective Disorder
    My daughter is 12 and finally , after being twice in the hospital (a month each time) in the past 6 months, she has a diagnosis though they are hesitant to use the title because of her age. She sees cats, giraffe, baby dinosaurs and recently two children and a man who just stares at her and scares her. Her paternal grandfather, father and uncle all have some form of schizophrenia.
    Labeled ADHD for years and none of the medications helping, I have fought with the doctors for years with no help from them. Im in upstate New York where getting regular mental health appointments weekly is almost impossible. There are no special schools for her unless I allo
    w her to go to one that treats behavioral problems. This option will only allow her to pick up bad behaviors, not help her.
    She is in her own world, her own fantasy most of the time and not in reality. To watch her struggle with trying to make friends is heart breaking to watch. Whats her prognosis? not I.
    She came home from a month in the hospital on November 12,2012 with new medications which so far are keeping the old man and all the rest of her visions and voices away for the time being but I mourn for the little girl I had 2 years ago. The one who was artistic, kind, outgoing,talented, loved by all and sane…….
    Im lost.

    Note from Michael: Email me at michaeljohnschofield@me.com and we will get you into either or both of our online support groups for parents with kids with mental illness. We have some other people in upstate New York so you far from alone.

    Update: I found you on Facebook and sent you a friend request.

  27. Look Within
    It would be healthy for your family once both you and your wife take an look at yourselves. it appears you are very grandiose in your thinking and your emotions follow suit. You view your child as a science project and now your young son is next in line. Your children need to be who they are in their natural state. It appears you both have an insatiable need to medicate, diagnose, interpret your children as though they are raw data. Let it alone and settle into your children for the wonders they are and make it a goal to stop feeding into your mania and frenzy. Come on you know many of these extremes would not be occurring if you would not be so extreme. Best luck to your beautiful family.

  28. close to home
    Hi Michael,
    I just finished reading your book. I had never heard of child-onset schizophrenia before. I always thought that it was triggered in adolescence or adulthood. My father had schizophrenia with auditory hallucinations. He was emotionally and physically abused as a child. He did not develop this illness until he was married. I remember going to see him in the psychiatric ward when I was only three years old. I remember the fear I felt watching all those people sitting and staring out into space. I was always so afraid. This was back in the 60s, so it was obviously much different then than it is now. If it weren’t for my mother and our strong family bond (I am one of five siblings), I don’t believe my father would have gotten better. There’s a lot to be said for the people that surround you and the love and understanding they give you. I truly believe that if Jani hadn’t had you as a father, she would have been stuck in her own world forever. I admire you for being the strong father that Jani needs, the kind of person who never gave up on his daughter. Jani and Bodhi are lucky to have you fighting for them. You are truly a courageous man.

    I suffer from panic disorder with anxiety. It came on suddenly when I was 19 and I’ve lived with it ever since. I can relate to the anger issues you said you have. I have always exhibited anger and never knew where it came from (although I have a hunch it’s from childhood). I have been on Lexapro for years and it keeps my anger in check, as well as my panic attacks.

    I wrote a review about your book on Amazon after I read the Kindle edition. It was all about how I commended you and your wife for all that you’ve done in making life safe for Jani and doing all that you could to get help for her. Then some person commented on my review saying that Jani was by no means schizophrenic; that she was just a result of “crap parenting” and that she was “autistic.” I felt the need to educate this person on the way schizophrenia presents itself. And now the comments and replies never end.

    I wish you and your family the very best that life has to offer. I pray to God that both Jani and Bodhi make strong recoveries, at least to the extent that they can always communicate in this world. May God be with you all.

    Note from Michael: Thank you. That person on Amazon arguing with you is “Sensible Psychology.” There is no point trying to talk to her. She believes all neuroleptic medications shrink the brain. I learned long ago not to engage with my critics. There is no point.

  29. miss
    I think you and Susan are dealing as well as possible with a tough situation. It’s time like these that make me wonder what God’s plans are for us all. I have been diagnosed shizo affective and it doesn’t get any better for me. I was 1st diagnosed at 17 and now several years later it seems to follow me and my life around. I am so sorry to post something so “hopeless” or “depressing” as to what the future holds but that is my reality. I don’t have much in the way of family or friends for support and so writing this seems to help me. I have been in hospitals more times than I can count and undergone every medication and ECT so many times. I just want things to go away.

    From Michael: I responded to your other post below. I can at least provide you with an online environment where you won’t be alone, if you are on Facebook. Email me at michaeljohnschofield@me.com

  30. I was diagnosed as schizo affective at 17 and am anow in my early 20s. I have been in and out of hospitals more times than I can count and have been on many different meds and even gone thru several rounds of ECT. I feel alone as I don’t have much in the way of families or friends to talk to or for support. Things just don’t seem to be getting better for me. It follows me wherever I go or whatever I try to do. I’m so sorry for presenting a terrible outlook for the future but that is how I feel. I wanted to connect with someone. God bless you and Susan and Jani and Bodhi. We need more advocates like you,

    Note from Michael: Kandy, are you on Facebook? We have a wonderful private online support group for adults with MI. They are wonderful people and you wouldn’t feel so alone with so many others just like you. If you are interested, email me at michaeljohnschofield@me.com or contact me at Facebook at http://www.facebook.com/janifoundation

  31. I don’t even know you people but I just cursed someone out on youtube for accusing you all of child abuse and other nonsense. I guess it hit home because I grew up with a brother who is bi=polar, paranoid and with a mother who has borderline personality disorder and I have MDD so I know chaos in the house.

    Stay strong, I’ll pitch in a few bucks when I am in better steed. Be well. 🙂

    Note from Michael: Hi BB. Don’t get worked up over what people on the internet who don’t know us say about us.

  32. 2 of 3
    Daughter diagnosed with Obsessive Compulsive Disorder at age 14 1/2, she is a pure obsessive-no earthshattering rituals,dwells mainly with her thoughts-doing well with meds,but it was a long road. Her older brother,diagnosed with the same at age 18 although he had shown mild symptoms very early on as an infant/toddler but was never really diagnosed. Both kids are now in their 20’s. Their oldest brother,ADHD,diagnosed around age 5. No meds. The other two also are ADD. Genetics big time!

  33. Hello Michael and Susan , Jani and Bodhi –
    I have seen you on t.v. and just finished “January first ” what a wonderful book! You both are amazing parents and i wish that other kids going through this type of hell had parents just like you to help them walk through it and out of it. I have a 10 year old son named Jack who has autism. He is non-verbal and at times is as the level of a three year old. And I love him more then I can convey. Its a concept that some people have a hard time wraping their mind around. Not the parents of children with special needs. Some days is hard to keep going and fighting the endless fight in a unwanted war, but if not us? Then who? I just wanted to let you know that your book, has inspired me to fight another day, another battle. THANK YOU! Big fans of the Schofields, Staci and Jack Verhei

    Note from Michael: Thank you, Staci. We have two great private online support groups for parents of special needs kids (all kinds). If you are interested, you can email me at michaeljohnschofield@me.com. We have one on Facebook and one in Yahoo Groups.

  34. Venus
    I just read a few pages in your book, in re the planet Venus.

    Venus does have an atmospheric pressure 92 times that of earth, but atmospheric pressure is not the same as surface gravity. The surface gravity of Venus is very close to that of Earth, so she would not, in fact, weigh “ninety times” what she weighs on earth.

    I ran this my by son, by the way, to check. He’s 8. He became the household astronomy expert when he was about three or so (and to be clear: I’m a PhD, and no dummy in science, but go to him for the hard-core stuff). Like your daughter, he spoke early (7 months), walked early (8 months) and spoke in sentences early (about 18 months, but was telling long stories by 21 months—I honestly don’t recall). He taught himself another alphabet when he was probably three, and is now on his third alphabet (and fourth or fifth language, I guess) at eight. I don’t actually find him that unusual. He’s quirky but not, thank god, mentally ill.

    So, anyway. I think your daughter sounds like a bright and curious and imaginative child with some real challenges. But I just wanted to pop in and let you know that your teaching of astronomy is incorrect.

    I hope that Jani continues to thrive and meet her many challenges.

    Note from Michael: Thank you for setting me straight. I wish Jani still had the same interest in astronomy but does not. Whether that would have happened anyway, whether it was the schizophrenia, whether she will come back to it, is unknown.

  35. The Role of Toxins
    Hi Michael,

    I just came across your story, because of your book. It was shared on FB by a friend. I followed to the Huffington Post and in the pictures that were outdoors I could see what some call chemtrails in the sky. Chemtrails are supposedly left by airplanes leaving aluminum aerosols in the atmosphere which eventually fall to the ground. I wonder if these are playing a role in your children’s condition. In addition to genetics, I wonder if they have been exposed to metals that trigger such early onset of these diseases. I wonder if you could find someone who could help you with nutrition therapies and detox. Surely the aluminum levels in your children’s bodies can be tested. I know this sounds freaking strange, but I also find it freaking strange the increase in many diseases such as autism which can be triggered or worsened by toxicity in the environment. I commend you for the wonderful work that you do as a parent and for the forum you’ve created for all the parents who find themselves in similar situations!
    Blessings to you and your family!

    Note from Michael: Chemtrails. That’s a new one.

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