I Am an Asshole (Cool and Cold)

I am an asshole.

 

This is a fairly common assessment of me by readers of January First over on the book’s thread on Goodreads.com. They like the book. They are unable to stop reading it. They keep going to the end, sometimes in the hope that I will acknowledge I’m an asshole and seek some kind of redemption, although I am not sure what sort of redemption I am supposed to seek. It doesn’t really matter, though. I am not looking for redemption. I didn’t write the book to be liked.

 

No, it’s not that the fact that some readers of either the book, this blog, or our Facebook page think I’m an asshole that surprises me.

 

It’s that they thought I wouldn’t be. That is what surprises me the most. That they can read everything that happened in January First and expect me to come out of that “nice.”

 

Am I missing something here?

 

Now, full disclosure: I probably had moments of “assholeness” before. The time before Jani and her illness is a distant memory but I certainly wasn’t perfect. I think without Jani I probably never would have gotten on medication myself. To the people who speculate that I am mentally ill myself…well, duh! No, I was a perfectly rounded human being before Jani. No, I have always had a more minor mental illness, which when diagnosed goes by the term chronic depression or bipolar 2 (no manic state) but it is better known by it’s common term That guy is an asshole. In females, it is known as That woman is a crazy bitch!

 

I am honestly not criticizing my readers here.  I don’t shy away from my reputation as an asshole. I am just genuinely wondering what they were expecting?

 

Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

 

Well, right off the bat I can tell you part of the problem is that it is not over. Books have to end. Life does not. It’s hard to reflect on something when you are still in it. Reflection is a luxury that comes with being safe and sound. First you have to feel safe and sound. I don’t.

 

Yes, I probably could have waited to write the book until I had to narrate it from my death bed. Or, as some have suggested, at least wait until Jani was grown and could give her “blessing.”

 

I didn’t because that might have changed the ending… the most important aspect of the book and the one that is so easily lost.

 

The book ended with Jani alive.

 

She is still alive.

 

By writing it, I did not guarantee that she would stay that way but I took a meaningful step. I entered her into the canon of public consciousness. From now on, no matter what happens, she is part of the Library of Congress, the collective consciousness of the United States of America. I have increased the odds that when asshole me is dead and gone, there will be people who will remember her and help her.

 

Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

 

You know, the little necessities of life that have to be taken care of before someone can sit and brood over their parents’ actions.

 

It seems like a little thing. Taking a shower. Most of you probably do it every morning without thinking about it. Why? Oh, sure, you’re afraid of somebody sniffing the air while you’re in an elevator and looking in your direction. Of course, that requires social awareness, being aware of the presence of other people around you and that you have to live and work side by side with them. Thank God for deodorant, Dentyne, breath mints, and Binaca. Stores are filled with ways to conceal the normal functioning of our body throughout the day.

 

If you are not socially aware of what other people think of you, how would you know that you needed to clean yourself?

 

But that’s not the only reason you take a shower. Think about the days when you don’t have to go out of your home. Let me ask you this. How long can you go without a shower, even when you don’t have to go out in public?

 

One day. Two days?

 

There is a limit, isn’t there? You know when it is. When you get up from lying down and your skin peels off the bedsheets like Velcro. When it feels like there is a layer of film on your skin. When you start to twitch from hating the feel of your own skin. When you can smell yourself.

 

How long can you go without brushing your teeth? Our dentist said that when he was in dental school, the students had to go one entire month without brushing their teeth, for the purpose of taking a sample of plaque off the teeth for culture. Can you imagine that? An entire month without brushing your teeth? How long does it take before your mouth feels like its lined with cotton?

 

In the end, it ain’t just social decorum that makes you take a shower or brush your teeth or wipe yourself after going to the bathroom. In the end, you can’t stand the way you feel if you don’t. You have to shower. You are compelled. The power of Irish Spring compels you.

 

But what if you don’t have that compulsion? What if you are disconnected from how your body feels so you never get that “skuzzy” feeling? Or “skeevy” as I think the kids say now, as in “Michael Schofield gives me this skeevy feeling like he is exploiting his daughter….” by wish I assume you are saying I give you a feeling like you need to take a shower. Good for you. Your brain is functioning relatively normally.

 

You know what happens if we tell Jani to take a shower?

 

She’ll turn on the water. And just stand there, looking blankly up at the shower head.

 

If I say “Wash your hair,” she will get the shampoo bottle, open it, pour some into her hand, and then slap in on her scalp.

 

So?

 

She’s hasn’t gotten her hair wet yet.

 

Okay, start again.

 

“Jani, wet your hair.” This is followed by innumerable commands of “keep going” because initially she just turns around and moves back into the water stream enough to wet the tips at the end. If she were Bodhi with his short, straight hair, this would be sufficient, but you know Jani’s hair. Everybody loves Jani’s hair.

 

Next, it is “Get the shampoo.” She does, like I described before, and slaps it on her scalp.

 

“Massage it in,” I have to tell her, followed by more “keep going, keep going, keep going….”

 

“Now the conditioner…..Eighty got a cat?….Mix it into your hair….. Eighty’s cat’s name is Seventy-Five?….. Keep going, keep going, keep going….We have to take care of Seventy-Five?…. Keep going…Where is Eighty going?…..Eighty has to go to Bakersfield, I see….Keep going… Yes, I know, we have to take care of Seventy-Five…

 

I will take a thick brush and gently attempt to brush out the tangles. While I do this I talk a blue streak about whatever she thinks her hallucinations are doing because if she screams, if she thinks I am “doing it too hard!” she will take the brush from me and rip it through her curls, pulling out huge clumps of hair without a whimper, which frankly scares the shit out of me.

 

I get a washcloth and wet it, because she will not remember to wet it before I say “Wash your face.” “Washing her face” for her means washing her chin. I suppose I could say “Wash your mouth. Wash your cheeks. Wash your nose. Wash your forehead,” but time is a moving here and we still have a long way to go so I end up taking the washcloth and doing a quick onceover her face.

 

Next, I rub soap into the wash cloth and say “Take the wash cloth.” I won’t wash her body. I haven’t in years. First, it was because after the DCFS investigation for sexual abuse, I didn’t want to take the change. Now it’s because she is ten and a half years old and I shouldn’t even be in the fucking bathroom any more.

 

I have to repeat my command to take the wash cloth several times, either because she is talking about her hallucinations or because she is busy putting her hand up her bottom to make sure she isn’t having a bowel movement.

 

Finally, she takes it.

 

“Wash Amy the arm.” “Amy” is her left arm. The only way I could get her to wash herself was to name her body parts. All of them. “Now wash Annie the arm.”

 

“Now, Sally the shoulder… and Sharon the shoulder.”

 

“Ursula the underarm.” Now that she is on the verge of puberty I make her wash her underarms. It took me forever to think of another female name starting with “U.” “Now, Uma the underarm.”

 

“Now, Chelsea the chest….Becky the belly. Now, Lisa the leg. No, get all of Lisa. You have to do the inner thigh.” She pauses because she can’t remember what the inner thigh is. I try to point to it without touching it but she thinks I am pointing to the outer thigh of “Leslie the leg.” “No, inner thigh. Inner thigh. The inner thigh.” I don’t know how many times I say this. She is just draping the wash cloth over her legs but I figure the soap runs down so the calves will get clean anyway.

 

“Don’t forget about Gina and Tina.”

 

“Gina.” Short for “vagina.” And “Tina the tush.” She spends more time with the washcloth up her butt that anything else.

 

“Okay, now rinse off.” She drops the washcloth. I have to tell her to turn around several times until all the soap is off.

 

“Okay, you can turn off the shower.”

 

She does. Then she screams “I’M WET!!!” at the top of her lungs, as if she just realized. I hand her a towel. She spends several minutes with the towel up her bottom and then attempts to get dressed with the rest of her body still soaking wet.

 

“Remember how I taught you to dry your legs?” I ask. “Wrap the towel around each leg individually and then move down.”

 

Sometimes she does. Sometimes she continues to scream that she’s wet while drying her bottom to the humidity of the Sahara.

 

Sound creepy? Are you creeped out? Does that make you feel “skeevy?” Good. It’s supposed to.

 

By the way, it’s the same process for Susan and Jani’s ABA behaviorist, who comes on certain mornings exactly for this purpose.

 

So am I worried about what Jani is going to think and feel when she is twenty years old?

 

No, I am worried about Jani being able to THINK and FEEL at twenty years old.

 

I am worried about her being able to take care of her basic hygiene.

 

The loss of hygienic awareness is what is called a “negative symptom” of schizophrenia. The hallucinations and the aggression? Those are called “positive symptoms” and they are easier to treat, provided the person suffering from schizophrenia takes his/her medication. “Negative symptoms” are the things that most of have or take for granted but those with schizophrenia do not.

 

And both positive and negative symptoms can kill.

 

Because the negative symptom of lack of awareness of hygiene is the first step to homelessness (or the appearance of it, like the guy in New York City the nice cop bought a pair of sneakers for). And homelessness ends in one of two places: prison or death.

 

Our only hope is to try and lock the process of bathing, body part by body part, into Jani’s mind so it becomes a repeating loop for her.

 

I find the saying “Cleanliness is next to Godliness” depressing. It feels like it is putting the severely mentally ill further and further away from God’s Grace.

 

I have to worry about Jani being able to do the basic requirements of human survival. And you wonder why I’m asshole?

 

While you sit in judgment of how the future will look back on me, I am still trying to ensure Jani is a part of that future. Because in the end I am a mammalian parent. And I do what all mammalian parents do when they feel cornered: lash out. Lash out whether you deserve it or not. It gets to the point where you don’t trust anyone anymore. The parents of the severely mentally ill will die for our children. And we see nothing out there, in your society, that makes us feel anybody else will.

 

You imprison our children. You hit them with stun guns. You pass them on the street. You beat them to death.

 

Why in God’s name would we trust you?

 

Some of us are just better at hiding it than others. Because we know we need you. And we all know our anger turns you off. You are fine with our pain. You sympathize with that. But our anger? No, that makes you turn away.

 

But so many of you turn away anyway. You see a cute girl on TV. You “like” a Facebook page. Then you move on.

 

For most of you, the seed I, and the other parents like me, have tried to plant in your mind will not germinate.

 

But for a select few of you. It will. It will and it will grow despite the aspects of us that you don’t like.

 

I am sorry that I don’t trust you. It will take me a lifetime to trust society again. Not because you are bad people. Not even because you weren’t there. No book in the world can ever truly give you the experience of what loving a severely mentally ill child is like. No, I can’t trust you exactly because of that. You cannot feel what I feel. It’s not the life that I hate. There is no pity here. But there is pain.

 

But you can’t function in pain. You have to get angry or you can’t get out of bed in the morning. And if you can’t get out of bed in the morning, severely mentally ill children will die. Today might be the day that everything unravels. All your victories are temporary. All your failures feel permanent.

 

My greatest failure is not that I can’t make you understand. That is only a shadow of my true failure, which is that I can’t fully understand what Jani experiences. But perhaps if I could, I would be no use to her. I try to tell myself that.

 

So that brings us to a catch-22, doesn’t it? In order to insure the survival and happiness of Jani and the countless children like her, I can’t do it alone. I need you. But the very nature of this experience is lonely. I can’t make you feel it. And so I get angry. And that potentially drives you away.

 

I don’t know how to solve this. I cannot be someone I am not. Neither can you.

 

But maybe, just maybe, in the midst of my anger and your confusion, we can remember that there are children here we need to save.

 

And we can save them.

 

We all need to be saved. We all need redemption.

 

And when severe mental illness does not kill anymore, when it does not destroy lives, that will be our redemption.

 

NOTE: This could very well be the last blog published here. Jani’s Journey will be moving to www.janifoundation.org soon. The Jani Foundation was incorporated in the State of California on December 17th, 2012 (Bodhi’s birthday) and 5o1c3 status is pending.

http://www.youtube.com/v/8-r-V0uK4u0?version=3&hl=en_US&rel=0

 

 

 

 

 

 

62 thoughts on “I Am an Asshole (Cool and Cold)

  1. Cyn

    Bravo
    I, for one, do not blame you for being angry. Sometimes you can only face a difficult situation by railing against it. And your family’s situation is more difficult than the vast majority of people reading your book, blog, and Facebook posts can comprehend — myself included (although I’ve seen what the disease can do to the person and those around that person, it has never directly affected me personally). In “Jani’s Next Chapter” one of the doctors interviewed said that it was you and your wife’s commitment to working with Jani on a daily basis that has allowed her to survive. And surviving is winning with schizophrenia. I honestly believe if I were in the same situation, I’d have to be angry most of the time just to keep from giving up.

    Note from Michael: Thank you. Yes, surviving is victory when it comes to schizophrenia.

    Reply
  2. Jennifer Brumley

    So relevant…
    I don’t think it’s so much that you’re an asshole, it’s that others just don’t care or are too ignorant to pay attention to what happens in the world. There’s a lot of selfishness, and it does suck. No wonder people like us don’t trust. I don’t have a severely mentally ill child, but I am a life skills coach/nanny to a 16 yr old with down syndrome and very severe autism, I go through similar things with her. She doesn’t know to get up in the morning, go to the bathroom, shower, everything is prompted like you said. And I’m saying that being “crazy bitch” like you phrased up there for bipolar II and other things. We just gotta keep fighting and tell them we’re proud of them for every accomplishment even it’s trivial to others.

    Note from Michael: Very true, Jennifer. I am in awe of their accomplishments, that THEY put up with us and our world.

    Reply
  3. Ruben Rafayelyan

    Hello, Michael. This was another wonderful blog. I have something to tell you: I am always with you guys until the end. :) If, I get to the point where I can take care of myself and get a job and a house–which I hope will happen in this lifetime, I hsve severe ocd and autism (aspergers was taken off of the DSM-V), which makes it harder for me to take care of myself. However, my, hopefully, future life and home is open to Jani and Bodhi. I sm applying to UCLA this fall, I only have two classes left at my community college. :) I hope I can find a way to live in L.A. safely, away from my family, sadly, and manage my mental health at the same time. I want to be a psych major so that I can get a PhD and research and discover new medications for mental illness. I just hope that I can function better by the time I get my PhD. Severe OCD and Autism is very hard to understand for people, I am smart; however, my functioning is low, I need a lot of support to even go to college or take care of my basic needs. Anyway, I love you guys, thanks for the birthday and the card. I went home so elated and I was crying, I have never felt so good as meeeting you wonderful people: Jani, Bodhi, Susan, and you, Michael. I am coming to L.A. on February 9th to see my doctor at MCLA, I hope to see you guys. I will try to find a ride to take me to your house. :) Have a wonderful day, Michael. Please keep on advocating for us snd Jani, we need more commited people like you. However, the true hero is Jani, who is fighting the stigma and the illness all at the same and still fighting strong–she has a strong will and a great spirit. Bodhi too, he is so funny and kind. Susan has passion for mental health that I have never seen in anybody before; while, you have such honesty and such emotions and dedication for helping every families out to the best of your ability. Your foundation will change lives and I am happy to be a part of it. :) :):)

    Note from Michael: That is very touching of you, Ruben. I know you would do anything for Jani and Bodhi. And don’t worry when you come to UCLA. We are just a phone call away. You will always have us to help you.

    Reply
  4. Julie

    I am an asshole (cool & cold)
    So thankful to have found your book, your blog, and FB page! You are right, we will never understand, but some of us are starting to ‘get it’! Susan & your comments, rants, profound statements–whatever people want to call them–are thought altering for myself, and I know there have to be others who feel the same way. Your portrayal of Jani is ‘real’, and your emotion and anger is also what makes it so real……I don’t sympathize with you, I empathize, I tear up or cry at your ups and downs! Yes, like a lot of people, I don’t like confrontation or attention, but I appreciate Susan and your honesty and ‘in your face’ attitude as that is what will make changes for Jani and other people with mental illness! Thank you!!

    Note from Michael: Thank you, Julie.

    Reply
  5. Karen

    I read your book, I’ve seen your interviews… I don’t think you’re an asshole, cool or cold. I think you were living in denial for a while… and who hasn’t done that at some point in their life? In reading your story, it is very clear to me how desperately you want a quality life for your daughter, for your family. And how desperately you have tried and tried again to get answers. No one can know the hell that you have lived with…. and that is an honest word, whether people want to read it or not. You have also suffered your own bouts of mental illness and you overcome them daily to take care of your family. To judge you is simple ignorance.

    Note from MIchael: Thank you, Karen.

    Reply
  6. Kat

    Ass holes are us
    Welcome to the club. We are all assholes in someones eyes. It’s ‘Damned if we do, and damned if we don’t.’
    We do the best we can, and sometimes it’s just not good enough for someone else.
    Keep on keeping on, and keep the faith.
    Ps I have faith in you… lol asshole

    Fellow Asshole,
    ‘Kat’

    Note from MIchael: Thanks for the laugh, Kat! I love that, “Assholes are Us.”

    Reply
  7. Samantha

    Showering is something I forget to do
    I fit into a category with Jani I forget to shower or don’t find it necessary. I’m bipolar and when depressed I become nearly catatonic I sit on my bed and stare at the wall sometimes I get a restless feeling and will pace through the apartment. I will go days maybe even a week or two without showering what actually gets me to shower is family members they often take me home and the conversation usually goes like this.

    Mom/Grandma: When was the last time you showered
    Me: I don’t remember (or I might remember a little and say last week I think)
    Mom/Grandma: Go take a shower
    Me: I don’t need one
    Mom/Grandma: Yes you do go take a shower
    Me: I don’t want to
    Mom/Grandma” You’ll feel better go and remember to use soap

    At this point I usually go I’ll wash my hair but washing my body is a foreign idea to me I figure getting wet is getting me clean enough. The same thing happens when I’m manic. When I’m stable I usually (but not always) shower regularly (and that includes using body soap).

    My mom cries for me she feels the same as you “what will happen if I die before my daughter” my mom doesn’t know who will take care of me. I live alone but she still provides distraction for when things are bad (She blames herself for not being there last week when I tried to amputate my left pinkie), who will tell me to eat, shower brush my hair. Who will give me money when my disability money runs out.

    I don’t know why I’m sharing all this maybe to tell you my mother understands you and I understand Jani.

    Also anyone who makes a comment about you being in the bathroom with her when she is trying to shower should be beaten up because like I said I understand Jani and without someone telling us what to do we wouldn’t do it we can’t make the decisions we don’t see the point of what we are doing I’m 22 for god sakes and I still need my mother to tell me go take a shower.

    Note from Michael: I know, Samantha. I knew about the pinkie amputation. Please message me on Facebook or email me at michaeljohnschofield@me.com and let me know how you are doing. It is important to me. You are Jani in the future. Your survival is EXTREMELY important to me.

    Reply
  8. Madison

    I ordered a copy of January First a few days ago. The reviews really don’t determine my interest in anything I order, but still, I take a look sometimes. The vast majority were understanding and supportive, but I was appalled at the people who said exactly what you stated, ‘Asshole,’ etc. I thought the same thing: ”Asshole? Really? This isn’t being an asshole. This is frustration. This is anger and fear for his little girl. What makes you think you could handle it ANY better?” Mr. and Mrs. Schofield, I am mentally ill, myself. And I WISH that I had had someone like you to fight for my life, my happiness and my treatment as you struggle for Jani’s and children’s ‘like her.’ I am 22 years old and I have lived with major depressive disorder, panic disorder, social phobia and obsessive compulsive disorder for my entire life. I was ‘born’ this way. My family and friends will never admit it, but most treated my illness like a burden. I was just a brat. I just want to make everything difficult for my parents. I am just a burden. At 12 years old, I was slicing my wrists, for which I was yelled at and punished. My brain was trying to kill me. And I was fighting it alone, against the anger of my parents and siblings towards me. I wasn’t understood at school, either. Teachers and classmates ridiculed me. My mind was constantly racing, commanding my actions. I locked myself away at every opportunity, terrified and untrusting of anyone and everyone. Until at 17, the struggle lead to drug addiction. I self-medicated to be ‘normal.’ Until I landed in a detox center, and the nurses were baffled by how to handle my rituals, my avoidance, the pacing, the crying. It wasn’t until I began outpatient DRUG RECOVERY treatment 10 months ago that I received the understanding and the medication that I so desperately needed. There was no understanding or help for my illness until I was 21 years old and in rehab. My father still tells me I burden him, my family still whispers to eachother. Do I have the same struggles and severity of Janis illness? No, I don’t. But I genuinely wish, so much, that I had had the love and care and concern that you show to your children. I wish someone had fought for me. Maybe I would have had a glimmer of a childhood. Maybe I would have found treatment and known happiness before 22 years on this Earth. Maybe I wouldn’t be a recovering drug addict and seen as a ‘junkie.’ I at least would not have felt alone. I may not have hated myself for so long. And these people have the GALL to call you an asshole? To say you are exploiting your daughter? It’s just baffling to me. You’ve both given your entire lives to your children’s well-being and happiness. Until you are mentally ill yourself, or have cared for someone with illnesses, you can’t understand. And you have no room to open your mouth. I’m sorry to you and your children, for how society has treated you and turned away. For the way that they look at you. I do not have schizophrenia, and I may not have the severity in an illness as you’ve witnessed and that poor Jani has lived with, but I’ve felt it, too. Society, and even my own loved ones have turned on me one too many times.

    Note from Michael: You remind me of a few of my friends. We have a great private online support group and we would love you have you. I see you left me a message on Facebook. I will friend you there so I can get you into the group.

    Reply
  9. Madison

    People don’t get it
    I ordered a copy of January First a few days ago. The reviews really don’t determine my interest in anything I order, but still, I take a look sometimes. The vast majority were understanding and supportive, but I was appalled at the people who said exactly what you stated, ‘Asshole,’ etc. I thought the same thing: ”Asshole? Really? This isn’t being an asshole. This is frustration. This is anger and fear for his little girl. What makes you think you could handle it ANY better?” Mr. and Mrs. Schofield, I am mentally ill, myself. And I WISH that I had had someone like you to fight for my life, my happiness and my treatment as you struggle for Jani’s and children’s ‘like her.’ I am 22 years old and I have lived with major depressive disorder, panic disorder, social phobia and obsessive compulsive disorder for my entire life. I was ‘born’ this way. My family and friends will never admit it, but most treated my illness like a burden. I was just a brat. I just want to make everything difficult for my parents. I am just a burden. At 12 years old, I was slicing my wrists, for which I was yelled at and punished. My brain was trying to kill me. And I was fighting it alone, against the anger of my parents and siblings towards me. I wasn’t understood at school, either. Teachers and classmates ridiculed me. My mind was constantly racing, commanding my actions. I locked myself away at every opportunity, terrified and untrusting of anyone and everyone. Until at 17, the struggle lead to drug addiction. I self-medicated to be ‘normal.’ Until I landed in a detox center, and the nurses were baffled by how to handle my rituals, my avoidance, the pacing, the crying. It wasn’t until I began outpatient DRUG RECOVERY treatment 10 months ago that I received the understanding and the medication that I so desperately needed. There was no understanding or help for my illness until I was 21 years old and in rehab. My father still tells me I burden him, my family still whispers to eachother. Do I have the same struggles and severity of Janis illness? No, I don’t. But I genuinely wish, so much, that I had had the love and care and concern that you show to your children. I wish someone had fought for me. Maybe I would have had a glimmer of a childhood. Maybe I would have found treatment and known happiness before 22 years on this Earth. Maybe I wouldn’t be a recovering drug addict and seen as a ‘junkie.’ I at least would not have felt alone. I may not have hated myself for so long. And these people have the GALL to call you an asshole? To say you are exploiting your daughter? It’s just baffling to me. You’ve both given your entire lives to your children’s well-being and happiness. Until you are mentally ill yourself, or have cared for someone with illnesses, you can’t understand. And you have no room to open your mouth. I’m sorry to you and your children, for how society has treated you and turned away. For the way that they look at you. I do not have schizophrenia, and I may not have the severity in an illness as you’ve witnessed and that poor Jani has lived with, but I’ve felt it, too. Society, and even my own loved ones have turned on me one too many times.

    Reply
  10. Kim H

    Sir, I just finished reading your book (doing so in three days), I do not see you as cold or an asshole. I find you to be loving caring father that would do (and has done) everything for his child, or I should say children (and his family). I commend you and your wife for your trial and tribulations and wish nothing but the best for Jani (I hope she finds peace she so desperately needs), you, Susan and Bodhi, as well as your entire family and support staff.

    Note from Michael: Thank you.

    Reply
  11. Liz

    What’s missing
    Michael,

    Surprise was my initial reaction to the idea that folks would think that you are an asshole – in this black and white term. This type of label is the result of pure ignorance on their part. Truly, anyone who has been through a battle like yours would HAVE to be an asshole. It is a war – you have to do what you have to do to get by. It is true that ‘the squeaky wheel gets the grease’ – had you not responded the way that you have, where the hell would your family be? Your assholishness has helped COUNTLESS people, you know that right? I’m not trying to make you feel better, as if you need it, you are not looking for a pat on the back. I am trying to make a point. What you do is not for self-gain or glorification. It’s for her.

    An asshole is self-centered and self-serving. Hello? Are people paying attention? Your children are the center of your life. You have spent the last XYZ years doing everything under the sun to keep things afloat for THEM.

    An asshole would not have put all of the extreme effort into finding answers, finding resources where there are none, finding a way to make this work.

    An asshole would not have stopped along the path to help dust others off and offer them support and assistance.

    An asshole would have sent her to residential care, followed your own personal dreams, and never looked back.

    Are these people even paying attention? Really? My life has been devastated by my MI. I was also early childhood onset, a time of true helplessness. My family did NOTHING to help me, Michael. Not a freaking thing. Ten years old, haven’t slept or eaten for days, in the corner of her closet, terrified that if the door is opened she’ll find herself sucked into the vacuum of space. She knows that this will happen because she’s heard it over and over for days. Yet, she’s just left there cause she’s “acting up again”. No treatment, no caring, no support or love. Instead threats and ridicule. I am alive today only because of poor timing. But, oh – they are such wonderful models of society. THEY are the assholes.

    I see you fight for Jani and I see the love, determination, and unwillingness to just give in to what might be. I admire the hell out of you and Susan. Truthfully, the caring that I see in your family helps to heal me a bit from the lack of that in mine. It makes me want to continue to fight for Jani and others who suffer. And I do, every day. .

    Thank you for what you do, you big asshole.

    Liz

    Reply
  12. Karen

    Not an Asshole
    Folks who don’t have a daughter/son with mental illness really don’t have a clue what it is like to walk in our shoes. Michael, I don’t think you are an asshole. You are a father who refuses to give up on his daughter because he has such love for her. You are a father who fights for what his daughter needs. You are a father who tries desperately to hold it all together amidst folks who just don’t understand.
    I have a daughter who has Asperger’s along with Schizoaffective Disorder. Working with her is a joy and a pain at the same time. We love her from the bottom of our hearts, but we get so weary adapting to make her world better. Most of our family just doesn’t get it. They chalk it up to bad parenting mostly. When we rejoice that she has agreed to put on a coat to go out in the cold, they criticize that the coat is open instead of closed. We are just glad she put a coat on at all.
    Those outside will never really understand what you live. Though these folks can be very cruel, know that there are many of us who know the truth — that you are a wonderful parent to Jani and Bodhi — that you continue the fight for them — that you won’t give up because you love them so deeply.
    So – no, I don’t think that you are an asshole at all.
    In similar shoes,
    Karen

    Note from Michael: Oh, yes, the “coat” thing. Yeah, that is another battle to get Jani to dress appropriately in cold weather.

    Reply
  13. Alpaca

    I have gone over a week without showering while inpatient on a psych unit. I usually won’t go that long when I’m around people but was such a mess at that point I really didn’t care. At home I’ve gone a week and even then will only shower because I have to go to therapy and the social cues kick in. But even with that the past few weeks have been bad and I went to therapy having washed my body but not being sure when I had last washed my hair and i just didn’t care. There are times when I could go weeks and weeks without showering if I didn’t have to go to therapy. There are frequent times when I don’t change clothes except to shower to go to therapy. There are times when the illnesses hit so hard that I no longer feel how dirty I am or if I do it feels right.

    Note from Michael: Thank you for sharing. People need to see how this disease works, the impact that it has. That you are not the way you are because of a “choice” but because you are suffering from a biological illness of the brain.

    Reply
  14. Carl W. Goss

    Jani
    Brutal, but it gets us closer to the everyday reality of Jani’s life. And please, you are not an A**hole. You are a caring father. Period. And you are entitled to get angry and lash out. I would.

    Reply
  15. Katherine

    I Can Relate To Jani
    I have to admit, I’m scared of what will happen when my parents are gone. Feeling humiliated when my mom says my hair is dirty or that I need a shower is just about the only thing that motivates me to put any type of effort into fixing it so she won’t think I smell and my hair won’t look greasy. It isn’t enough to motivate me into an actual full shower of washing my entire body and hair though. I have my own ways of getting myself clean enough so that I can “pass” as presentable. Regular hygiene habits don’t even come to my mind otherwise. So when my parents are gone, will I just look homeless? Will I ever feel dirty enough in my own opinion to clean myself properly? And that is one of the more minor things to worry about when thinking about what will happen when my parents are gone. It really is scary. A similar scary to what will happen when my dog dies.

    Note from Michael: Katherine, that is why one of the JF initiatives are community mental health centers, where all your daily needs can be meet, so you will always have a place to come where people who get it will help you. But in the short term, you always have us.

    Reply
  16. Lizz

    Funny thing about that…
    I was talking yesterday about reading your book and how I just wanted to hug you. She told me everyone else thought you were an asshole. XD

    Reply
  17. Karen Dunning

    Michael,
    I can so relate to the whole shower, wiping, brushing teeth, hair, heck even changing clothing thing. It took me years to accomplish even half of that stuff with her. Now however, as she slips further and further into the almost adult schizophrenic world, she has lost or forgotten almost all self help skills. I asked recently if she brushed her teeth. Yes, as I see the fur on her teeth. Ok, I try again. When did you brush your teeth? Ohhh, a couple of days ago. No longer is it enough to ask IF she did, now I must be more specific…. If I insist she wash her hair, sometimes she just smears deodorant on it because “it smells clean” sighhhhh. Or she violently pulls her hair at the front and back of her head, never even getting soap on the top or sides…. I will spare you and your readers the issues in dealing with the monthly female stuff.. I’m sure you can imagine all that. Sad as it may sound, I hope I live longer than Alysha. I simply cannot imagine another person alive who would love, care and tolerate her as I do. I wonder if you feel the same way….

    Note from Michael: Yes, I do. Which scares the shit out of me because I don’t expect to live longer than Jani.

    Reply
  18. Karen Dunning

    Michael,
    I can so relate to the whole shower, wiping, brushing teeth, hair, heck even changing clothing thing. It took me years to accomplish even half of that stuff with her. Now however, as she slips further and further into the almost adult schizophrenic world, she has lost or forgotten almost all self help skills. I asked recently if she brushed her teeth. Yes, as I see the fur on her teeth. Ok, I try again. When did you brush your teeth? Ohhh, a couple of days ago. No longer is it enough to ask IF she did, now I must be more specific…. If I insist she wash her hair, sometimes she just smears deodorant on it because “it smells clean” sighhhhh. Or she violently pulls her hair at the front and back of her head, never even getting soap on the top or sides…. I will spare you and your readers the issues in dealing with the monthly female stuff.. I’m sure you can imagine all that. Sad as it may sound, I hope I live longer than Alysha. I simply cannot imagine another person alive who would love, care and tolerate her as I do. I wonder if you feel the same way….

    Reply
  19. sentiMENTAL paRANTing

    Asshole is so relative
    From where I am sitting, you are just being honest and real. That doesn’t make you an asshole. These are stressful situations and I appreciate your real and raw approach, allowing the rest of us to not feel so alone. You seem to have a lot of nay-sayers….screw them! If they don’t like what you are writing, that is a simple solution, stop reading it.
    We can all be a Tina at times, no one is free of that flaw. The Ginas that cant hang with reality, they are the real problem.
    Keep on truckin’ Michael!

    Reply
  20. Teenager

    Dude
    I really loved the book. I read it in like one night, and I am only 17. You are actually a really good writer. There will always be critiques though. You said it like it was. You didn’t add extra fluff, you told the truth. I have a very high respect for you because of that. And you can never be an asshole if you tell the truth.

    (BTW I freaking LOVE that song!!!! THANK YOU!)

    Reply
  21. Julie J

    I just started reading your book and I think it is brutally honest and excellent. I have followed your story since your first appeared on tv. I want to thank you for being one of the inspirations when I teach Crisis Intervention to police officers and other government agencies. I am a parent of a bipolar son and I relate to everything you have stated. When I teach I always make the statement, “I wish my kid had cancer”. Pretty awful thing to say, but as you know, and as I further explain, if my son had cancer think about all the support and funding we would be getting to provide our children with a better life. At the end of the day, those parents of cancer children and us parents of MI children are fighting for the same thing, to keep our children alive.
    Keep up the good work!!! Many hugs to you and your family.

    Note from Michael: Julie, I would happy to help you in your teaching of crisis intervention to police officers in any way you would be like. You can reach me at michaeljohnschofield@me.com.

    Reply
  22. Gryphon

    You Have a Right to Be Angry.
    I’ve read your book, I kind of stayed up all night to read it (And fell asleep in music theory the next day) and after reading it all I can think is you have a right to be angry. You have a right to be afraid. You have a right to every human emotion everyone else has.

    Reply
  23. mommy dissident

    Amen
    Thank you for saying it all for us again…we will fix it or die trying. Blessings Jen

    Note from Michael: Yes, we will. I would rather die trying and than live doing nothing.

    Reply
  24. Brenda Rhodes

    Michael, I first heard about Jani when I saw you guys on Oprah some years back. Then I saw you on Dr.Phil and heard about your book. I read your book in 2 days! I was amazed and shocked and in love with you family when I finished! My heart hurts for you guys but I also appllaud you for what all you have done to protect and to get help for your daughter. I haven’t ever been through anything like this, and I cant even begin to imagine how very hard this must be, yet you guys have trugged forward , only thinking of your kids! Jani is such a beautiful little girl! I never knew that about the bathing and hygiene. Just one more thing that people without kids with mental illness take care for granted. Keep on going forward as you have been, please. I really do believe you can and are making a difference!

    Note from Michael: Thank you. I am trying to share different aspects of the illness that make life challenging for those with severe mental illness.

    Reply
  25. kathryn worden

    Michael,

    I don’t know you; you don’t know me. I don’t have kids, so I can’t even imagine what you have gone through with Jani and Bhodi. But here’s what I do know: I read your book in one day. I was touched by your story. I didn’t once in your book think you were an asshole. Not a single time. I admired your single-handed determination to do everything you could to help Jani be the best she can be. You let nothing get in the way of that. That doesn’t make you an asshole. That makes you an incredible father who cares more about the welfare of his daughter than what other people may think of him. Jani is a better person for having you as a father.

    I am a speech pathologist, and work every day with a wide variety of children with an even wider variety of diagnoses. I’ve seen a wide range of parents, from hands off, don’t give a crap about their child to exploiting their child’s diagnosis, to the completely overwhelmed, to sacrificial parents who want what is best for their child. You fit in that last category. One day my husband and I will have kids. And one day, I want to be the kind of parent you are: absolutely in tune with my child, willing to sacrifice to make sure they can be who they are meant to, loving and understanding, and above all, accepting and loving them for who they are, where they are. You, sir, are an inspiration to me.

    In addition, when I read your book, I had recently admitted, and sought help for, the fact I was suffering from depression. I had in fact, suffered for many years, but wasn’t willing to admit it. My grandmother had it, my mother had it, my younger sister had it. I distinctly remember being taught even in college that to some extent it was mind over matter. So, I viewed it as weakness. It wasn’t until I was married, and there was someone else it affected deeply, that I had the courage to admit I had it. And your book was part of the reason I had the courage and the mindset that allowed me to admit to family that the reason I was so distant, irritable, and angry was because I was depressed. So, thank you. Thank you for your honesty in your book. Though you have been through hell, though you have been subject to the opinions of others, though you feel you are alone, though there are few who understand your position and what you have been though, know that you have changed the lives of others, mine included. Thank you.

    Note from Michael: Thank you very much. It means a lot that in some small way I inspired you to get help. There is nothing wrong with medications. The way I see it is: why make our lives harder than they already are? If there is something that can help us be more the person we want to be, we should try that.

    Reply
  26. Lorraine Alipanah

    Most people think that the hardest pain a human being will ever have to endure is the loss of a child. WRONG! You are living through the greatest hardship a parent will ever have to experience. The fear that their severely mentally ill child will out live them. Who could possibly love that child as much as I do? Who will ever take care of my baby like I can? Where will he go? How will he get food? What will happen when I am no longer here to make sure the meds are taken and the inside lock is bolted? I am not personally affected by this, but I know a couple of people who are. One of them was a nephew who at the age of 42 was spared a life without his parents. It is hard to understand how an early death can be anything but a horrible tragedy, but sometimes, just sometimes it is. His 70 something parents are now trying to learn how to live without him. Their entire lives have been the day to day routines of bathing, feeding and caring for their son. Now it is just the two of them. I truly believe that when God chooses the parents who will be given the challenge of caring for a child like Jani, he picks the ones he knows will love unconditionally, who will do whatever it takes to give them the best life possible, and that is what you are doing. Don’t ever give up. Don’t ever give in, there is a reason you and your family have been given to the world and we are blessed that you have the God given talent to share with us what you are going through. May god bless and Keep you and your family. You are loved.

    Note from Michael: Although I appreciate the sentiment, knowing someone who did lose their child when he was only six, I have to imagine that is worse. I cannot imagine that pain. I don’t know that I could go on.

    Reply
  27. Melissa

    Haters gonna hate!
    Well said Mr. Schofield! I am quite pleased you addressed this, because the negative reviews on goodreads bothered me… A LOT!! After reading the book I just could not comprehend how anyone with half a brain would see your writing as an exploitation rather than a devoted loving father determined to save his little girl. I felt your anger. I felt your frustration. I cried when you cried! The whole time reading the book and for days after I just wished I could hug Jani. It completely baffles me that readers would take such an opposite feeling away from the book.

    I am so proud of you and Susan for not only accepting that this is the job that has been given to you, but also for raising awareness to early onset mental illness. Being an asshole is what happens when you are at war with the world in an attempt to save and protect your family! Kudos to you! Jani and Bohdi are so lucky to have you two as their parents, and I believe that regardless of any mental illness they will always know that in their hearts!

    Reply
  28. Melissa

    Haters gonna hate
    Well said Mr. Schofield! I am quite pleased you addressed this, because the negative reviews on goodreads bothered me… A LOT!! After reading the book I just could not comprehend how anyone with half a brain would see your writing as an exploitation rather than a devoted loving father determined to save his little girl. I felt your anger. I felt your frustration. I cried when you cried! The whole time reading the book and for days after I just wished I could hug Jani. It completely baffles me that readers would take such an opposite feeling away from the book.

    I am so proud of you and Susan for not only accepting that this is the job that has been given to you, but also for raising awareness to early onset mental illness. Being an asshole is what happens when you are at war with the world in an attempt to save and protect your family! Kudos to you! Jani and Bohdi are so lucky to have you two as their parents, and I believe that regardless of any mental illness they will always know that in their hearts!

    Reply
  29. Gayle

    Unlike so many others both here and elsewhere, I have no particular experience with mental illness – neither having it nor being around people who have it, aside from a couple of short-lived romantic relationships many years ago. I also don’t have kids, so I suppose I have very little basis for relating to your and Jani’s stories and a whole lot of room for potential misunderstanding. Despite that, you’ll get no harsh judgments from me. I don’t imagine you’re perfect, but it seems absolutely obvious to me that no matter what your faults may be, the most overriding fact about your character is that you’re trying to the best of your personal ability to take care of your kids under almost impossibly difficult circumstances. I’m not in any position to know exactly how much your parenting efforts are succeeding, but one thing I do think is clear even from this distance is that you’re trying very hard. And isn’t that really the most that can be expected of anyone? To try their best and not ever stop trying? There are plenty of parents who do stop trying, or who never really much start trying in the first place, to provide care to children much less difficult to take good care of than Jani is. You’re doing the right thing here, and it’s inspiring. So I think that anyone who reads your story and focuses primarily on the mistakes you’ve made, even if those mistakes are significant, is missing the bigger picture – something like looking at a rainbow and complaining because one portion of it is fainter than the rest. Rainbows are inspiring because they exist at all, no matter what their variations in brightness may be.

    Reply
  30. Jamie

    I read your book and you are not an asshole. You should be commended for your dedication to your daughter. The assholes are those in our society who abuse and neglect children, certainly not the ones who strive to make sure they have the most support possible to reach their highest potential. You and your family have many supporters, try not to let others and their negativity bring you down.

    Reply
  31. Anonymous

    Mean Girls
    You’re a crusader, a knight in shining armor, not an asshole. The ‘mean girls’ need to find another calling. They could join Orly Taitz’s Birther Group. Their negative obsessions and persistence would be would put to appreciable use.

    Reply
  32. Meaghan Good

    This is off-topic, but…
    Michael, I was wondering if you could do something with your foundation or whatever to publicize the disappearance of Bobby Sine, a young man with schizophrenia who disappeared a year ago this week. He was psychotic, hadn’t slept in four days, hadn’t eaten in a week, and having suicidal delusions, but when his mom took him to the hospital they allowed him to refuse treatment and go home. This was in Mount Vernon, Washington on February 6, 2012. Mom was driving Bobby home from the hospital when he jumped out of her car and went running towards the river, and no one’s seen him since then.

    I added the case to my missing persons website today: http://www.charleyproject.org/cases/s/sine_robert.html He’s got a “Find Bobby” facebook page I linked to at the bottom. My website has a lot of missing people with schizophrenia and this case is incredibly distressing to me. If the hospital had just done its job and provided him with the medical treatment he so badly needed, this wouldn’t have happened.

    Note from Michael: Meaghan, sounds like a California case of a man who went missing here. I will publicize. Thanks for letting me know. I am assuming I can get the info from your site.

    Reply
  33. Meaghan Good

    Yes, you most certainly can. I let people “borrow” from the Charley Project freely, as long as they cite me.

    Note from Michael: I shared to our Facebook page: http://www.facebook.com/janifoundation. We have over 8K fans. I confess I read the date wrong. I thought he went missing on 2/2/13, or last week. I got far more depressed when I read it was 2/6/12, over a year ago.

    Reply
  34. Stephanie

    I don’t think you’re an asshole. You’re a dad who loves his kids and is trying to do his best. Thank God your kids have you. I agree, telling Jani’s story will enlighten people about mental illness- and society needs enlightening, that’s for sure.

    Reply
  35. amazed

    Amazed
    Hey, I just found your vids on YouTube. I can honestly say I have NO idea how you guys cope, and you are both really amazing people. I suffer from mental illness and it is really difficult, and I can’t imagine having two kids myself without just wanting to give up and run away. You are really brave. I don’t really get why people think you’re an asshole, I was really shocked at the lack of empathy to be honest. Keep going, stay positive…

    Reply
  36. Claire N.

    My brother, 5 years older than I, had Down syndrome, and I started helping with his bath times when I was about 8. He had to be told to do everything: “OK, now it’s time to wash your private parts …” After my brother died, I missed him, so I took a second job at a group home for mentally challenged people. I supervised a lot of showers there. Like my brother, you had to tell them, “Now it’s time to wash under your left arm …” And like my brother, they would dig and dig at their skin with the soapy washcloth until I told them they’d done a good enough job and could stop now.

    My other brother, 11 years older than I, has Aspberger’s and bipolar I. He’s on meds. He has an I.Q. of over 160. When we lived together, I often had to remind him to bathe — AND TO USE SOAP. He’d come out of a 30-minute shower smelling not much better, because he hadn’t used soap, because he’d heard “it dries your skin out.” He emailed me the other day wondering why he had a bad rash. I asked him about his bathing habits, which he’d let lapse since we’re not living together anymore, and sure enough, he’d go a week without bathing. I had to give my genius-level older brother explicit instructions on how to wash himself and how to use fresh towels to prevent what I assume from his description was some sort of fungal infection.

    I realize mental retardation is different from mental illness, but your shower story is so distressingly familiar. How many tens of thousands of times had my now deceased brother and the group home residents been drilled in how to take a shower? And yet, they needed supervision every freaking time.

    And my brilliant mentally ill brother, now in his early 60s, who could probably tell you what Josef Stalin had for breakfast on April 23, 1942, and what Stalin talked to Beria about that day, still hasn’t made the connection between bathing and the prevention of crotch rot.

    You’re not an asshole, Mike. You’re tired. And BOY, do I get it.

    Reply
  37. Fibie

    What the fuck is wrong with people?
    Firstly my apologies for making a comment when (some might say I have no right to because) I haven’t been following the ‘whole story’; that is to say I haven’t read your book or the comments which allude to it. I come to you today having only seen a documentary about your amazing family on youtube, having Googled Jani’s name…and here I am (thanks for having me :-) ) This blog is my 2nd opening into the lives you have been brave enough to share with us….and I’m stunned, quite literally. People say you’re an “asshole”??? A WHAT??? What the fuck is wrong with people?? It absolutely breaks my heart that, having opened your lives to us – your own, your wonderful wife’s, your daughter’s and you son’s; a candidness that we are infinitely the richer for, on this difficult path we call ‘life’…and you feel even for one second you have to go down that road?!! Please don’t! Wonderful WONDERFUL family!!

    Reply
  38. Marc Fashe

    I’m hearing…
    …what you say and I wouldn’t ever dare to criticize you or your wife. People simply can’t be empathic enough to understand your daily and everyday struggle. Keep being strong.

    Reply
  39. Lorena

    Hi, my name is Lorena. I am 35 years old and I live in Colombia, South America. When I was 15 I started a journey down the mental illness path, and I’ve collected more diagnoses than I can count, including major depression, PTSD, bipolar disorder, Asperger’s, social anxiety disorder, etc. I am basically misdiagnosed, underdiagnosed or overdiagnosed, I’ll never know. The mental health system in my country is very precarious, and most of all struggle all our lives alone to achieve the closest to a functional life (happiness seems sometimes out of the question). Many, many, many live on the streets or become drug addicts.

    Last night I watched a documentary about Jani on Discovery Channel, and boy, am I glad I have therapy in 2 hours because I haven’t stopped crying since then . You and your family’s story touched me beyond words. The mental disorders I’ve been diagnosed with (either right or wrong) are nowhere near schizophrenia, and yet, I am convinced that all mental patients (and their families and loved ones) share many things, regardless of the name or names of the illnesses.

    There is a scene, before you take Jani for the hospital after 11 months of not having to do that, where you are with your wife in the car an Jani, and Jani is sitting there balling her eyes out. She is in such an anguish and pain, and you and your wife just look at her and keep telling her “I know, Jani, I know. You need help. We’re going to take you to the hospital”. Do you realize… the amount of compassion and wisdom it takes to read the unintelligible mind of our child, and without fulling understanding what is happening, having the ability to know she needs reassurance and support? Believe me… not a lot a lot of parents bother to develop those skills, mine sure didn’t. And it’s not just a work of love. It’s work of strength, perseverance, and willpower.

    You are absolutely and completely admirable.

    It doesn’t matter if you’re angry, it doesn’t if you’re tired, it doesn’t matter if you don’t have all the answers and it doesn’t matter if you don’t always do “the right thing” (whatever that is). YOU ARE THERE. You haven’t given up on her. You want her to have the best life possible and you strive for it. And anyone who has a mental illness or loves someone with a mental illness knows what it means to STAY, whether you’re a parent, or spouse or a friend. Staying is not something a lot of people do. Most can’t bear the pain and the confusion, and give up.

    I am one of those “crazy bitches”. People don’t understand why I am so angry all the time, so frustrated. It’s not easy not being angry and not lashing out to people who don’t deserve it. It happens. It’s part of this. It’s part of struggling every single day with a monster that is trying to take all the good that is in you away. “All your victories are temporary. All your failures feel permanent.” And that is so freaking frustrating and painful.

    I understand, and I’m sure a lot of people out there understand too.

    I know sometimes it doesn’t seem like it. I know that the everyday struggles seem to be bigger than anything else, but what you’ve achieved with Jani is incredible. The things you’ve done for her and continue doing. The tireless efforts to bring her to our world. to give her tools that seek to ensure a dignified life for her in the future, the faith in her… It’s all so very valuable.

    Many hugs to Jani, Bodhi, you and your wife,

    Lorena.

    Note from Michael: Lorena, are you on Facebook? We have a wonderful private hidden support group for adults with mental illness. If you are interested, you can write me at michaeljohnschofield@me.com. I hate the idea of anyone being alone in this struggle.

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  40. Kristin

    Oh my goodness, tangles…
    I intend to read the book when I can purchase it. My broke ass usually find other means of getting books onto my Nook, but I don’t want to do that with yours. Based on my reading of this blog though, you’re not an asshole, you’re just someone who refuses to fit into the expected trope of a parent with a mentally ill child. You keep it real. Keep keepin’ it real.

    Now about Jani’s hair… would she tolerate a good hosing down with No More Tangles? My parents used it for me as a child. I had long hair and a tender scalp. It saved them a lot of frustration and me a lot of tears. It really works and it also smells nice.

    Speaking of smells, I have found that the way to get myself into the shower (I have unipolar depression and showering just seems so tiresome sometimes) is to have really fun soap. I am currently on a weird baked good kick as a friend makes soap that smells like blueberry muffins or chocolate cake and buttercream icing. I prefer these scents to the scent of myself a few days without a shower. Maybe that would help her note the time that’s passed? Just a thought that I thought I’d pass along.
    :) Take care.

    Note from Michael: It is just nice to know that there are functional adults like yourself who have that same issue. It gives me hope. Thank you.

    Reply
  41. Maria Grace

    Jani Foundation and Jani’s case on TV traslated to Spanish
    Michael,
    Thanks for all the help and inspiration you have brought to me and to my family, Jani inspires my family and I to keep fighting this fight, we have helped my brother and we keep helping him, your precious girl has helped my family a lot, I explained them your case and my parents were very interested, most of all when they saw Jani’s case on TV….IN SPANISH!!

    My parents were watching TV and I was cooking, when they called me and asked me “Is that Jani? The girl with a Schizophrenia diagnose?” and I said “Yes” and there was Jani at the age of nine, I think, you and Susan were still in separate apartments and she was going to school 1 hour away from students.
    It also talked about the medicine, and everything (voices and letters) were in Spanish, there were parts when you and Susan would talk and wasn’t translated to Spanish but most of it was, and my father got really interested in the case…They both noticed seriously how much Jani’s symptoms are like my brother’s, I am thinking he is Schizophrenic, I have checked symptoms and I believe he does have some of Schizophrenia, as well as Autism and OCD, I believe it is a mix of mental illness symptoms, the psychiatrist has affirmed that hypothesis to my mother.

    I would like to thank you again for the inspiration, for publishing her case, for giving us hope and strength to keep fighting and welcome others to the fight against mental illness and for helping me, my family and my brother. I look forward to explain Jani’s case to all the people I know and educate about Mental Illness through my life experiences by my brother’s side and by Jani’s case.

    She is truly an inspiration and a Blessing from God, let her know how much she has helped us, if you would like to contact with my family and talk about Mental Illness, I give you their e-mails and I can translate it to them, we have to spread the word and keep educating others about mental illness and reach the goals.

    My father agrees that Laura’s Law must be not only in every state of America but in every country of the world, that is a long walk, but let’s start the journey and keep fighting!

    Note from Michael: Thank you. That means a lot to me. If I can be of any assistance to your family you can write me at michaeljohnschofield@me.com.

    Reply
  42. Carolina

    The best for you
    im from Argentina. Last monday i saw your documentary on Discovery. WOW, all I can say is that you and your wife are amazing. the Love with accompanying your children, deserve all my admiration and respect. the best for you guys, and Jani and bodhi. Regads. Carolina.

    Reply
  43. Lissy

    I´m sure that prayers from all around the world will help you and your family. I´m convinced that everything happens for a reason and your experience is helping thousands. God will never leave you alone. Stay Strong!! Greetings from Panama

    Reply
  44. Kayleigh

    You are not an ass hole. You reacted in ways everyone else would, you didn’t hide the fact that you struggled in order to highlight the difficulties you all faced, many people would try to hide their own ‘failures’. You and your family are an inspiration.

    Reply
  45. Natalie

    I think you and your family are great. I read your book and have been watching all the documentaries and interviews you have done. You are such a loving father who deeply loves his daughter. God bless x x

    Reply
  46. Amy

    I can’t imagine why someone would label you an asshole. It’s so easy to sit back and judge others when you are not in their position, are not living their life or experiencing the stressors they deal with daily. You are a stronger man and parent than pretty much anyone else I know or have heard of. I was touched by the fact that you were trying so desperately to see Jani as the creative, wonderfully intelligent child that she is rather than looking her disease in the face. It’s what any parent would do, try to see the best in their child and wonder why others would see anything different. Ignore all the naysayers, Michael, they have not walked a mile in your shoes. I’m quite certain they wouldn’t be able to take more than a few steps in your shoes before they were exhausted mentally, physically and emotionally. You have big shoes to fill.

    Reply
  47. Stacy

    Not an asshole
    I discovered “January First” today. My usual practice when I have a bout of depression is to find a story about someone who is struggling through circumstances far worse than any I have ever known. Jani’s story certainly fits that bill. And I definitely see no signs of “asshole” in you or your story. I can understand how some might see the book as potentially damning for Jani as an adult, but really, I doubt that will be Jani’s worry then. People don’t understand that those with such severe mental illnesses don’t worry about many of the same conventional social niceties that most do. And I think the book is a fabulous way to raise awareness about the shameful and shocking state of mental health care and the criminal justice system in our country (I rail about this in a lot of the classes I teach, hoping that some of tomorrow’s leaders will care enough to try and help fix our broken system). If the money from the book allows you to better care for Jani, then more power to you. People don’t understand how EXPENSIVE mental health care is, or how awful most insurances are about covering it.

    So, let’s see; you love your daughter more than anything and would do anything to help her. You love your wife and son as well and have managed to keep your family together through all of this, which many can’t do. You’ve raised awareness about child onset schizophrenia and mental illness in general, which is fabulous. And you’ve started an NPO in your daughter’s name to help others like her. Plus you run a private online support group for others like yourself. Oh! And you also actually take the time to respond your readers posts. Yeah, some asshole you are…Sounds more like a prospect for sainthood to me. If you’re an “asshole,” Michael, then the world REALLY needs more assholes like you in it.

    I wish you and your family, and especially Jani, all the best.

    Note from Michael: Thank you.

    Reply
  48. Anonymous

    Well, I haven’t read your book, but you do come across as an asshole on the numerous TV shows you’ve been on. Otherwise, why do people think you are an asshole? Your post needs more context/explanation. Thanks.

    Reply
  49. Anonymous

    Note to person that mentioned Asperger’s and the DSM V: The DSM V is not out yet and nobody is going by it yet. Trust me, most of us (professionals) don’t even know what is in it yet so the reason your getting treatment has been harder lately has nothing to do with the DSM V. Just saying. Best of luck with your illness.

    Reply
  50. Anonymous

    Oh, your post was longer. MUCH longer. Sorry about my original post. My bad. I really only saw the first paragraph & thought wtf, this needs some elaboration. Again, my bad, and best of luck. Looks like you have quite your share of admirers on here and have inspired many people.

    Reply
  51. Anonymous

    I just read the whole
    Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

    I don’t know what others say, but that line right there is pretty assholish.

    Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

    And then you go on and on about normal people taking for granted the ability to take a shower, I think,
    missing the entire point. You sound like an ass for pointing that out, or saying it like that, in the
    first place. It’s not about the shower–I’m sure people believe you alright?–it’s about the fact that
    you take every second you get to exploit your daughter. That’s the sickening thing.

    But hey, we’re not even talking “sickening” here yet–so far you are only an “asshole”. I don’t know
    why you come off as an asshole–I think everything you say is so matter-of-fact and just way too
    “proud” regarding her illness and all of the troubles you have faced. Is it possible to say things
    with a little bit of modesty? You can’t say “What do you expect me to be after all that I have gone
    through?” because what I would expect is, quite frankly, a little bit of himility. I would expect you
    to be humble and wise. I would not expect a guy that seems to live for being in the limelight, and
    every word he speaks drips with pride and sarcasm. I would expect someone who has LEARNED that what
    is important in life is to LOVE, and to be the best human being you can be. That is what I would
    expect, not an asshole who just wants to profit of his child(ren)’s illness.

    For the record, I found your page because I recently had a child (2 months ago, my first). I saw her
    staring off into space and as a first time mother, I didn’t know this was normal, and that babies
    do not even actually see people clearly for a few months! My mind immediately went to this documentary
    I saw a couple of years back (which happened to be Jani’s first documentary on TLC), and so, fearing
    schizophrenia (since it runs in her dad’s family), I looked up Jani to see if I could find those
    first videos of her staring into space and see what other symptoms, if any, she had VERY early on as
    a newborn/baby. My point is, I didn’t come on here knowing anything about you, or having any opinion
    of you, much less intending to hate on you. I didn’t remember you or the mom from the documentary–like
    I said it’s been a while–but after watching it again today (plus two or three more), I’m sorry, when
    you talk, you just do kind of come across as a very arrogant and not very pleasant person. And it has
    nothing to do with your reaction with the bad parts of her illness. It is more like “Here’s my
    daughter with schizophrenia and I am getting paid for this so HAHA, I LOVE IT!!”

    Note from Michael: Well, that is your interpretation. I actually don’t get paid for any of it. I hardly enjoy it. I am angry. I am angry at attitudes that expect me to be happy after seeing the disease destroy the lives of children. Humble? No. Not by any of you. I am fucking pissed off and will be until no more mentally ill children die.

    Reply
  52. Anonymous

    I just read the whole “I’m an asshole” post…
    Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

    I don’t know what others say, but that line right there is pretty assholish.

    Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

    And then you go on and on about normal people taking for granted the ability to take a shower, I think,
    missing the entire point. You sound like an ass for pointing that out, or saying it like that, in the
    first place. It’s not about the shower–I’m sure people believe you alright?–it’s about the fact that
    you take every second you get to exploit your daughter. That’s the sickening thing.

    But hey, we’re not even talking “sickening” here yet–so far you are only an “asshole”. I don’t know
    why you come off as an asshole–I think everything you say is so matter-of-fact and just way too
    “proud” regarding her illness and all of the troubles you have faced. Is it possible to say things
    with a little bit of modesty? You can’t say “What do you expect me to be after all that I have gone
    through?” because what I would expect is, quite frankly, a little bit of himility. I would expect you
    to be humble and wise. I would not expect a guy that seems to live for being in the limelight, and
    every word he speaks drips with pride and sarcasm. I would expect someone who has LEARNED that what
    is important in life is to LOVE, and to be the best human being you can be. That is what I would
    expect, not an asshole who just wants to profit of his child(ren)’s illness.

    For the record, I found your page because I recently had a child (2 months ago, my first). I saw her
    staring off into space and as a first time mother, I didn’t know this was normal, and that babies
    do not even actually see people clearly for a few months! My mind immediately went to this documentary
    I saw a couple of years back (which happened to be Jani’s first documentary on TLC), and so, fearing
    schizophrenia (since it runs in her dad’s family), I looked up Jani to see if I could find those
    first videos of her staring into space and see what other symptoms, if any, she had VERY early on as
    a newborn/baby. My point is, I didn’t come on here knowing anything about you, or having any opinion
    of you, much less intending to hate on you. I didn’t remember you or the mom from the documentary–like
    I said it’s been a while–but after watching it again today (plus two or three more), I’m sorry, when
    you talk, you just do kind of come across as a very arrogant and not very pleasant person. And it has
    nothing to do with your reaction with the bad parts of her illness. It is more like “Here’s my
    daughter with schizophrenia and I am getting paid for this so HAHA, I LOVE IT!!”

    Reply
  53. Tina Miller

    I don’t know you…
    I just wanted to say something and I want you to listen to me. I have 3 children with the same traits as Jani from their birth and I was the same as well. I have empowered them from the beginning and let them know that they are the ones in charge. They are the ones with the power of control. They tell their ‘friends’ what to do. They tell their ‘friends’ to leave them alone. This is hard for them but they are so very intelligent and creative. Slowly they gain the understanding that their ‘friends’ were really their feelings of which they do have control. My children do not take medications at all and are under no psychiatric care. They function normally in society.

    Jani has lived now so many years thinking she was a victim which will now make recovery even harder and more treacherous, that is when you decide you want her to get better. You must decided if you want it. Please watch the documentary The Secret. You choose how you react no ones makes you feel, and no one has control of your reactions.

    Note from Michael: “The Secret?” Yes, and Tony Robbins makes an excellent psychiatrist.

    Reply
  54. DP Rakowski

    Assholes of the world, unite!
    Michael, I haven’t yet read the book, but knowing how many people have registered such strong opinions has inspired me to do so ASAP!

    My wife and I are the parents of 4 children with a variety of special needs. We feel like there’s hardly enough time to breathe, and I know I’ve been short-tempered, a bad co-worker, a lousy friend and even worse as a husband and father. I’ve been told I’m too opinionated and often unjustifiably angry (the latter makes me want to scream – I mean, put up with some of the barriers we’ve had to hurdle, including assumptions of poor parenting skills, insurance companies that refuse to pay for appropriate and necessary therapies, judgmental family members who think we just need to put a bit more effort into our parenting and things will be PERFECT just as it is for them, and school officials who nominally care about the children but apparently care more about avoiding the expense of educating a child with the multiple classifications of our oldest two children – and you’d be angry, too).

    So, yeah, I’m an asshole, too. It seems that I’m in good company.

    Keep fighting the good fight, sir! I’m behind you all the way!

    Signed,
    Dan – asshole-in-training from suburban Detroit

    Note from Michael: Thanks, Dan. Nice to know I am not the only asshole out there.

    Reply
  55. Sandra

    Hi Michael, I read your book receently and have to thank you so much for sharing your story. You put a voice to the many private, hellish thoughts that have ran through my brain in the last 5 years. My middle child has suufered at least that long with mental illness, and has been “diagnosed” with many different things, including at one point Schizophrenia. (not the most recent however). For the most part I have kept my thoughts to myself (except for sharing with my husband, who is the is only person close to me who truly understands). The past year my daughter has made several gains in her mental health mostly due to DBT therapy. I live in constant feer or relapse. She is the one who bought your book, read it and gave it to me to read. She said that it gave her insight into how I was feeeling ( she’s a very bright young lady!) I understand the anger whole heartedly, and have been thinking lately that I perhaps need some therapy of my own to learn to deal with it, but reading some of your comments make me feel that perhaps I should just “own it”,and that it is my right. I know there is nothing I say that hasn’t already been said to you in terms of best wishes for you and your family. I wish I had been aware of this blog when I was in the depths of my despair because it truly would have helped. I could rambeon more but I wont. It must be a massive job keeping up with allof the comments. Take care of your self and your wife. Your health is as imporant to your family as their own is.

    Note from Michael: Sandra, you are definitely not alone. I don’t know how old your daughter is but we have two private support groups (on Facebook). One for adults and another for parents. If either you or your daughter would be interested, please email me at mschofield@janifoundation.org.

    Reply
  56. surakmn

    Thanks
    I came across the book completely by chance – it showed up near the top of the non fiction list I was browsing while checking out some ebooks I’d reserved at the library. The subtitle struck me as I also have a daughter with mental illness.

    I have to say thank you for sharing your story. It’s deeply personal and traumatic and that’s a difficult thing to do. To be honest, in places I felt like I was “reading” a train wreck – horrible things going on, but I couldn’t take my eyes away. And it was therapeutic, cathartic even, seeing other people’s struggles. Few things are more frustrating than being the parent of a child with mental illness and the helplessness you can feel saturates to the core. Fortunately my daughter doesn’t have schizophrenia, but I’m very accustomed to the all hands on deck emergencies, living on pins and needles trying to maintain calm, and unfortunately my wife has fibromyalgia and isn’t able to help on a equal basis much of the time so it all falls on me.

    I doubt anyone calling you names has personal experience dealing with chronic illness, or with mental illness. Because until you are living with it yourself in real time you simply don’t “get” it. You don’t “get” what it’s like just trying to survive moment by moment, day by day, without concern for the future because just getting through the moment is so stressful you have nothing left.

    The public glare can be uncomfortable. Thanks for your willingness to step forward and be a voice. There’s a lot of education and change needed with policy makers, within the medical community, etc. to make things better, to make getting care easier for children with mental health issues. The visibility is needed and helpful. You’re doing good work, so thank you.

    Reply
  57. Ruth

    me too
    I have only one thing to say. My gentle, sweet-natured schizophrenic son killed my mother last week, because a voice told him to do it. As I live through a Category 5 grief, I am preparing to work to change the law. I am gathering strength, even as I have none, for asshole comments about me and about our family. I gave one interview the day after the funeral, and I have not read any comments or even watched it. I know that right now I do not have the strength to endure such personal criticism.

    Reply
    1. Michael Schofield Post author

      My God. There are no words. If there is anything we can do, if you would like to share your story, we would be honored to help spread the word.

      Reply
  58. readersquest

    Michael – My grandmother used a little chant to wash our faces when we were little, and I used it on my own boys:

    Forehead-acher;
    Eye-winker;
    Nose-dropper;
    Mouth-eater;
    Chin-chopper!

    Maybe Jani would like it.

    You are so not an asshole. Stay strong.

    Reply
  59. readersquest

    This post also answered a question I was going to try to email you: how you resolved for yourself the ethical challenges involved in writing about a child with SMI. An old friend recently asked me to write a book about her experience parenting a daughter, adopted in Ukraine, whose illness has had multiple diagnoses and has made no progress. I just tracked down the birth family and learned that there’s a “family curse” (bio-grandmother’s term) in the female line…the birth mother almost certainly has severe schizophrenia, the grandmother is functional but seems to have delusions of being a faith healer, and the aunt is in prison. I’m going to bet that “my” young lady will eventually be found to be on the schizophrenic spectrum. If nobody knows about children like Jani and Nadia, nothing will ever be done…there will be no change. Hopefully, her mother and I will get the word out and join you in Asshole-Land. We’re just hoping that Nadia will live long enough and be functional enough to be angry with us for telling her story in public.

    Reply
    1. Michael Schofield Post author

      I don’t see an ethical problem. How am I violating Jani’s rights if I am trying to save her life? No, comments like that tend to come from anti-psychiatry extremists. No one would ever question you if you were writing about your child’s struggle with cancer. So why do they question you about disclosing a child’s mental health status?

      Reply

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