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Never Be What is In Your Heart (You and Me Got Plenty of Time)

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I had an interesting dream last night. I don’t often dream anymore, in more ways than one. Human sleep patterns are interesting. There are five stages of human sleep: one, two, three, four, and REM sleep. One and two are light sleep stages. Three and four are deeper, with four being the deepest. At stage four, the heart rate slows dramatically. The alpha brain wave, the wave most active when we are awake, essentially flatlines. Most likely, the alpha wave is our conscious mind and at stage four, we enter true unconsciousness in preparation for REM. However, REM sleep is not restful at all. Heart and respiration increase during REM, accompanied by significant spikes in delta waves. We dream during REM sleep. This is why you feel exhausted when you wake up from an intense dream. You have gone straight from REM back to stage one, bypassing the stages at which the body relaxes again.

 

When I wake up from an intense dream, there is a brief period of time where I am not sure if the dream actually occurred as reality. Yes, I know I am in my bed in whichever apartment I happen to be in, but that doesn’t mean that what I dreamed about didn’t really happen. It takes a few moments for my logical brain to kick in, remember where I was when I lost consciousness (in bed) and conclude that therefore the intense experience I remember must not have happened. All of us have this moment of fact-checking when we first wake up from an intense dream.

 

I imagine that for Jani, this is her entire life experience. Perhaps for her REM continues at the same time as waking sleep (although her 30 second EEG when she was five didn’t show anything unusual, but would they know what to look for?) so Jani is never quite sure if what she remembers actually happened or not. She is always “fact-checking.” Unfortunately, those of us without psychosis can latch upon the last “hard memory” we have, which is usually going to bed. This gives us a baseline of reality with which to compare to experiences that occurred in the gap between going to sleep and waking up. If the last thing I am sure really happened was I lay down in bed and tried to sleep, then it is unlikely that I was actually in Minneapolis airport, trying to find the correct gate for my flight home to Los Angeles (I cannot read in my dreams). I remember being in my bed. Then I remember desperately trying to find my flight home, an experience which felt extremely real. Then I wake up in my bed. Not enough time has passed and I don’t actually remember going to Minneapolis. I just remember being in the airport. So clearly I wasn’t really there.

 

For Jani, there are no fixed points in reality. Jani constantly asks me questions that I have already answered, such as “Is Honey okay?” Yes, Honey is fine. We just took her out three hours ago. But does Jani remember that happening? Jani will ask me if Honey is fine even though she just saw Honey in the other room three minutes ago. Has she forgotten? Us neurotypicals take a sense of linear time for granted, but Jani’s conception of her environment may not be linear. As the hallucinations intrude, they squeeze out the present “real” moment, leaving Jani with unaccounted for gaps in her memory of the day. Jani’s existence may be like a dream for the rest of us. In dreams, we shuttle from place to place instantaneously. One moment we are one place, then we are in another, and since our logical mind is asleep, we don’t question the instability of time and place. The common component of a dream is you just go with it when it happens. Driven entirely by emotion, you react to your dream without questioning the apparent lack of logic in what is happening.

 

Jani is constantly re-emerging from Calalini and having to figure out where she is and what just happened. Hence, the questions as to whether Honey is okay.

 

If you are extremely physically exhausted, your forays into REM sleep will be shorter. You will spend more time in Stage 4 sleep in order to allow your body to regenerate (which it cannot do during REM). Maybe that is why I so rarely remember my dreams.

 

But last night I took Bodhi to bed around 5pm and didn’t wake up again until 5am. I think I slept long enough to allow for REM sleep toward the end of the cycle.

 

And I dreamed.

 

It’s been more than eighteen hours since I had the dream, so much of it has faded. However, what I remember was it featured the woman I very nearly had an affair with over two years ago now. Let’s call her Sarah (not her real name, obviously).

 

Let me provide some context.

 

The real Sarah was a co-worker of mine, a fellow instructor at CSUN. At the time, in late Spring of 2008, Susan and I were emerging from the trauma of Jani’s first two hospitalizations. First the first five years of her life, Jani had never spent a night away from either Susan or myself. Then, suddenly, she was in the hospital because she was so violent and nobody really seemed to know why. When we had first been referred to a psychiatrist, I had been sure that the psychiatrist would be able to pinpoint what was wrong with Jani and direct us how to fix it. And I didn’t go looking for a drug necessarily. I was just looking for an answer, the directions to restore my daughter to who she had been before she became violent. If that answer was me, if it was my fault, I was fine with that. Just tell me what I can do to fix it.

 

But there were no answers. No obvious continual psychological trauma. No physical abnormalities. Nobody broke out the DSM-IV and said “This is what she has.” Maybe bipolar. Maybe ADHD. Maybe some combination of the two. The doctors and therapists really weren’t sure. And believe me, I confessed everything I had done or might have done to cause this. No, no, they said, I don’t think that would cause this.

 

I was used to diagnosis, then treatment. In psychiatry, it’s backwards. You try to treat the symptoms and whatever works then determines the diagnosis (although in Jani’s case she was eventually diagnosed with child-onset schizophrenia because UCLA ran out of any other potential diagnoses).

 

I wanted to know why Jani was violent. I believed it was because she was so unhappy that life didn’t meet her needs. She was brilliant and the world just wasn’t smart enough for her. I believed then that if MIT had come knocking for Jani, she would be fine. She was “Good Will Hunting,” her violence a product of unmeet emotional and intellectual fulfillment. But I couldn’t find anyway to meet what I thought then were her needs. I tried, but even Will Hunting, despite his genius, couldn’t function at MIT. Jani might have been brilliant, but the world belonged to the morons. They set the rules. I feared Jani’s violence toward Bodhi, believing it was because Bodhi had come out into the world her ready to be her intellectual and emotional companion. The violence against me was nothing. I quickly developed a high pain threshold. What bothered me the most was I felt Jani’s violence was coming from her unhappiness, and I couldn’t fix that happiness. The decision to use medications was about trying to help her deal with a world that wasn’t made for her.

 

I wanted the meds to allow Jani to find some joy again in our world, in the things she had once loved. I wanted her to be able to live within the limits set by the morons and not turn into Vincent van Gogh.

 

But they didn’t work and Jani ended up in the hospital. And even there there were no easy answers. It was just keep trying medications, playing with the doses, until they found something that worked. When they couldn’t, the second hospital, Loma Linda, simply encouraged us to get “tougher” with Jani. Not that they took her off her medications, at that time Seroquel and Depakote.

 

Jani returned from two sets up hospitalizations totaling a month in April of 2008, and for awhile it seemed like things were stabilizing. The violent rages dropped from 10-12 per day to 2-3 per day. And I had to become the authoritarian parent, something I had never wanted to be. I was tough on Jani, really tough. When she got violent, I would drag her into her room and lock her in, staying outside, listening to her rage and throw anything in her room not bolted down, telling her she could come out as soon as she calmed down. In an attempt to connect her actions to consequences, she had to tell us why she’d been placed in time-out before she could come out. “Jani, why are you in time-out?”

 

A pause.

 

“Because I screamed.”

 

“Well, yes, but that wasn’t why you had to go in.”

 

Another pause.

 

“I kicked.”

 

“No, that wasn’t it.” I thought at the time that she didn’t want to take responsibility. I thought she knew and she just was avoiding it.

 

“I hit.”

 

“Who’d you hit?”

 

Another pause.

 

“Bodhi.”

 

“No, you didn’t hit, Bodhi. Come on, Jani. What did you do?”

 

It took me months to realize that I had to fill in the blanks for her about what she had done, coaching her like we were doing homework. It took me months more to realize she was running down a list of everything she might have done until she got the right answer. It took me months to realize she wasn’t avoiding the answer because she didn’t want to take responsibility. It took me months to realize that she really didn’t know the answer.

 

It is called “disassociation” and it commonly occurs during psychotic episodes. But I didn’t know that then.

 

But things seemed to be getting better. I believed Jani was “learning” that her actions had consequences, that she couldn’t just do anything.

 

But once I was the authoritarian, I couldn’t be her friend, the one who understood her world. So I was just a father now.

 

Susan and I were so spent from the crisis we had just been through that we had nothing to give to each other. It was all about keeping the kids going.

 

Of course, it always had been, but I guess I believed it would get better. Now, in May of 2008, with the immediate crisis over, all the emotions I had repressed the previous six months came bubbling up and I found myself asking “Is this it? Is this all I have to look forward to, just being the authoritarian parent and trying to keep the household running and teaching?”

 

It is called a “mid-life crisis” but it can happen at any time. It is when you ask yourself, “Is this all there is?” and you can’t see your life getting any better, any different. It will just go on and on and on like this perpetuity.

 

So you start looking for something to look forward to.

 

For men, for me, this became the arms of another woman. Most women aren’t aggressive when they find out you are married. This one had no qualms. If I was unhappy in my marriage, I should get out. Life was too short.

 

This woman made me feel like a teenage boy again. I wanted to spend every second with her. I missed her terribly when she was away. She was the only thing in life I looked forward to.

 

She liked me because I intelligent, fun (or so she thought), and I was younger than her, which probably helped to validate her.

 

But just like I’d done with girls in high school, I was telling her what I thought she wanted to hear. I became more terrified of losing her than losing my wife, and so I suppressed what was really going on inside me, which wasn’t pretty. I had just gone to a place I had never imagined I would ever go. Something had gone terribly wrong with my daughter but it seemed to be partially “fixed” by me being the authoritarian father figure. I had been Jani’s friend, but that wasn’t enough. I felt inadequate and I felt I had become everything I didn’t want to be.

 

“Sarah” and I worked together one morning. I really needed to see her. I needed to feel her touch. What I really needed was to be held. I didn’t want to be an adult. I wanted to be a kid, to be held, to be told that everything would be alright. I never told her this but in truth I was jealous as hell of her teenage son. I wanted a mother, not a lover. I wanted her to stay with me; I needed her to stay with me, but she wouldn’t. She had plans. She told me to “relax” and left with a friend. I went back to my car and broke down crying in the staff parking lot at CSUN. I sobbed for more than thirty minutes. I needed to go home. Susan had both kids. I needed to go home, but I didn’t want to go home because it would be just more of the same. More hell. Sarah was my only escape. So I got out a piece of paper from my briefcase and wrote her a letter. It was not very coherent. I was barely functional. In this letter, I revealed to her what I really was, a huge, gaping, black hole trying to suck her into my internal hell. I left it underneath the windshield wiper of her car.

 

For the next several days, she didn’t talk to me. The flirting emails stopped. Eventually, she admitted that my note had scared her.

 

I am glad it did because it drove her away and prevented me from committing infidelity.

 

For any of my readers with mentally ill or autistic children who are in this place right now, who have someone in your life that you think is going to save you from the despair you feel, do me a favor. Do what I did. Show them who you really are. Reveal the pain and despair that lives inside of you everyday. Because they need to know. They need to know that you are not like them. You may look like them. You may even occasionally act like them. But the truth is you have been scarred forever by your experience and all the passion in the world won’t close that wound. It opened when you found out your child was sick and it will never close.

 

Once you have been where we parents of mentally ill/autistic children have been, you are forever isolated from most of the rest of humanity. They have never felt what you feel everyday, and you will never again feel what they feel.

 

In my dream last night, Sarah returned to my life. Perhaps she had forgiven me for being such a freak. I don’t know. Maybe she really felt something for me after all. At any length, she was back, and once again, I was choosing her, except that this time I wasn’t going to tell Susan. I was going to have a secret affair.

 

In the dream, Sarah asks me for a time when we can get together. And I wanted to get together. I wanted it so bad. But that was were reality entered the dream.

 

Every day that she suggested, I couldn’t do. “How about Thursday?” she said in the dream, “I am free Thursday.”

 

“No, I can’t do Thursday. I have to be with Jani that day.”

 

And it went on like that. She wanted a full day where we could be together, but I couldn’t do it. Even in my dream, I knew there was no one to take Jani. There was no place Jani could go, no person she could spend the day with, where she would be happy and content long enough for me to go fuck another woman.

 

I realized I couldn’t do it. As much as I wanted Sarah, I couldn’t abandon Jani. I had no time for an affair. I reluctantly told Sarah I just couldn’t do it.

 

Then I woke up. Bodhi was lying next to me. It was 4:45 in the morning.

 

Well, shit, I thought to myself, even in my dreams I can’t escape. Even in my dreams, when my logical mind is not functioning, I will not abandon Jani.

 

Then I smiled. So I guess this means that my commitment to Jani is so deep it goes beyond my conscious mind.

 

I know why I had the dream. I am not much of Freudian, but I know I want to escape again. Life has been so hard lately. It is August 22 and I still haven’t been able to pay the rent on Jani’s apartment. This is the deepest into the month we have ever gone without paying the rent on one of the apartments. Right now, the cost of rent keeps increasing with late fees and legal fees as the apartment complex begins the process of eviction. It is coming down the pike now. I don’t know how much longer.

 

If we can make to September 18th, I can cash out my retirement account and use that, but that account only has four grand. It will buy us another month or so (given how far behind we are now). And then what? There is nothing on the horizon. I still teach but because of my need to take care of Jani I still cannot work enough to pay the rent on both apartments.  Every month that we actually manage to pay rent is just delaying the inevitable.

 

But that doesn’t bother me as much as Jani’s struggles. She is trying so, so, so hard to keep from going back to the hospital, not that UCLA seems to want to take her. If they wouldn’t take her when she tried to cut her wrists with a serrated piece of metal in her therapist’s office, I don’t know what else they want? Death? I know it is because they don’t know what else to do. There are no more medications to try and without new meds Blue Shield won’t pay for her stay.

 

Things are up and down. She loves to help me cook. But she also has developed a bad habit of touching the pots and pans when they are on the stove. Last weekend, she grabbed the frying pan and burned her fingers. Not badly, thankfully, because it wasn’t up to full heat, but she seemed to have no awareness that touching the stove will burn her. We ran her hand under cold water and called UCLA again. I left a message but they never called me back.

 

The next day, I turned around while cooking to discover she was touching the pan again, but this time she had put on an oven mitt. I was so proud of her and she was proud of herself. I thought maybe things are turning around.

 

Then today, at Denny’s, she decided she was unable to wait for her food and grabbed my arm, putting it up against her neck. “What are you doing?” I asked her.

 

“Trying to choke myself,” she replied. I pulled my arm away but she kept fighting for it. When she couldn’t get it, she tried to choke herself, something she hasn’t done in years.

 

Are you listening Dr. DeAntonio at UCLA?

 

Send her to residential, you say? What’s to stop her from choking herself there?

 

Then she spilled water on herself and tried to strip naked in Denny’s. But that is nothing these days.

 

I am starting to crack. Not the “I am going to end it all!” crack. Like I said, there is no escape. I spend my days performing surgery on Jani’s number hallucinations who she brings to me with broken legs or severed limbs (the only thing that will engage her when there is nothing going on). I never get a break. I can never stop.

 

So of course I want out. I want out of this life.

 

But I can’t go.

 

Escape is just a mirage in the desert. I know it will disappear as soon as I get there.

All I have right now is the desert. I know that one day the rains will come again and the flowers will bloom. I know nothing lasts forever.

 

But the rains are a long way off right now.

 

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12 comments on “Never Be What is In Your Heart (You and Me Got Plenty of Time)

  1. Thank you for your honesty, as always. I’m sorry things have gotten dark again. I’m starting a new job this week, after being unemployable for the last year due to mental illness and drug addiction. I’ll have a paycheck in two weeks, & it’s all yours if i can get an address to send it to. It won’t be much, but maybe it’ll help a little. You and Jani hold a special place in my heart, I wish I knew how to set up a fundraiser for you guys. I’m going to look into it. As for wanting to escape this life, I know that feeling all too well. I’ll soon have six months clean & sober, and I still struggle most days to keep my feet on this earth. when it rains, it pours, but one day the sun will shine again. i have to believe that, or at least try to. keep your head up, you are an amazing man; a father children dream of having.
    and please, let me know how i can help, peace to you & yours

    Note from Michael: That is very kind, Ashley, but you keep your paycheck. You have more than earned it with everything you’ve struggled against. However, if you are interested in fundraising the person to talk to is Marla at marla@janifoundation.org. I think it will be awhile before we do any fundraisers but she can keep you in the loop.

  2. Has ECT ever been brought up as a possible treatment. It’s not often used as a treatment for schizophrenia anymore and I don’t even know if they would do it in a child but it has been shown to be a short-term option for schizophrenic patients.

    Note from Michael: I don’t know if it is used in children but I also don’t think we are that desperate yet.

  3. Wow. You’re writing is always SO honest. It takes a lot of courage to write so honestly like that, for any random person to see.

    I relate so strongly to your wanting to “escape” your life and be a child again. I’ve been feeling that way for years and years. Instead of an affair, though, I chose to “escape” through self-starvation, and that’s how I came to be six-months into a rocky recovery from anorexia. It’s such a horrible feeling to want so badly to escape, and yet to know logically that escape is not possible. No matter how much damage I do to my body, I’ll eventually either have to deal with the issues I don’t want to face, or die. Escape is an illusion. It’s a horrible thing to come to terms with, and the “this is all there is” feeling can be unbearable at times.

    You’re right, though. Nothing lasts for ever…

    Note from Michael: A rocky recovery is still a recovery. I think the desire for escape is natural and when it comes we have to find peace in that moment. Accept the desire to escape. You can accept a desire without giving in to it.

  4. Jani
    Brutal. I’m pretty much at a total loss for words. But I do think you are making concrete progress in helping Jani escape her imprisonment at Calilani.

  5. Hello
    I have learned so much from watching the story of your family on Discovery Health, and from reading your blog. I have twin sons with Fragile X Syndrome and you explain how things are after a diagnosis so well here — how nothing will ever be the same and no one, no matter how much they try, will ever really get that. You explain so many things that I think and feel so much better than I could.

    I look forward to your posts and hope that one day I’ll have something more to offer you than just my thoughts and prayers. Until such a day, you have those at least.

    Note from Michael: Thoughts and prayers are nothing good. Would you like to share a little more with my readers about Fragile X Syndrome? If you would like, I could link your website to mine.

  6. Everytime I read your blog I feel like I am, for a small 20 minutes that it takes me to read your entries, identifying with someone like myself.

    My husband didn’t know me during my rock bottom time and I am glad for that, but sometimes I wish he did. Rather than leave me be during my “black” times he tends to get angry with me for shutting him out. He doesn’t understand that I am only shutting him out to protect him from the darkness and that it is only going to last until “the rains come and the flowers bloom again.”

    When I was inpatient for a stretch of time during my teenage years, they tried to teach us coping skills like, reading, going for walk ect. The only coping skill that I learned and that worked for me was to just recognize what was happening in my mind and riding it out until it was over instead of panicking and losing foresight. Not that this is easy, because it is far from it. Sometimes it is hard in my mind to see reality and not get sucked in by my minds vices. Somedays i’m just so sick of fighting it that I am physically exhausted and temporarily lose touch with my one “coping skill.” And this is the time where my husband tries to desperately rescue me, but he can’t. He doesn’t understand why he can’t and that makes him angry, either with himself or with me, I’m not sure.

    I always tell him that there is nothing he can do and that it’s not his fault but he thinks it is his fault, that he did something or said something to cause it to happen. Obviously that is a false assumption on his part but I have run out of explanations for him. Me telling him that mind simply does not work like his and that there doesn’t have to be a cause for me to fall into the hole no longer suffices for him.

    Although i’m sure this blog probably isn’t the correct place to ask for suggestions on how to deal with explaining mental health issues to a neurotypical spouse, I have run out of ideas on what other places to look. Every option I have explored from books, to therapists gives me “cookie cutter” answers that have no plausibility in the real world.

    Do you have any suggestions for me of where to look for ideas or skills on working through mental illness with a spouse? Other websites or blogs that deal with the topic?

    Also, on the topic of donations, do the donations on paypal have to be in certain increments or are any amounts accepted? I do not have a substantial amount of money to donate but I would like to help your family in some way. I feel like those of us that are caught in the throes of mental illness are in this together and everyone has something to offer whether it be words, support or monetary contributions. Please let me know how I can help.

    Note: I think it this is a common issue for men. We are wired, when presented with a problem, to try and “fix” it, and when we can’t, we get angry. That anger comes from feeling powerless. It took me a long time to accept that I can’t “fix” Jani and that sometimes I just have to ride her psychosis out, and it is still a work in progress. It is just hard to accept something like that, although I have found it the most beneficial. I think you talking to your spouse doesn’t do a lot of good. He needs to hear from another man, and even then he may not be able to accept it. All I can say is see if he is willing to read my blogs, such as this one. I would also be happy to talk to him if he was willing. My email is michaeljohnschofield@me.com.

  7. Hello micheal and family,I have been reading your story and blogs all summer,and my gratitude to you is beyond words.I have suffered from depression and ptsd since 1994 but my real concern has always been my children.My older daughter is also bright with a high I.Q. but was violent,jumping out of cars,expressing suicide since the age of 4.I had to leave her father when I was pregnant with my second daughter,due to violence and drug abuse.I met a good man 2 years later who was and still is my soul mate.We did the best we could but there was so much blame,and mis-diagnosis on behalf of my daughter.I did everything in my power to see her through the delusions,drug abuse,anger and so on.She managed to graduate from college,but she is lost.I was recently having a session with my psychiatrist when i was explaining to him how real thoughts were bothering me and even infiltrating my dreams.After a lot of discussion he explained that my thoughts were real events of abuse that my mind could not let go of,–real things that happened,real things and accusations that sick peaople would in real life scream at me.These real events carried into my dreams,became nightmares and woke me up.He asked me what i thought about people that wake up from these dreams or have these thoughts and could not tell if they were real or not.This was eye opening to me and i could not imagine the suffering that people must feel with hallucinations.That is why i responded to this blog I wish you the best

  8. An Insider’s View
    “It is called a “mid-life crisis” but it can happen at any time. It is when you ask yourself, “Is this all there is?” and you can’t see your life getting any better, any different. It will just go on and on and on like this perpetuity.”

    Hi, Your writing makes it clear to me how the parent of a schizophrenic child must take on the problems of the child, and it becomes like partially having it yourself. But w/o direct control it must be very hard indeed!

    Jani is 8; in 10 years she will be 18, and then have the right to make her own medical and home decisions. So ultimately she will have to “do it” on her own – cope and survive on her own like all us schizophrenics must do, whether it’s in a hospital, group home, or in her own place.

    At this point ‘the dad’ can and will become mostly ‘the friend’, and your hardest part should hopefully be over.

    Right now IMO her young age is working against her, making coping harder then it is for us adults where it’s hard enough! Hopefully she is observing and learning what works and what doesn’t to some degree and can improve with age.

    She’s also still in the ‘starry phase’ where the whole phenomenon of hearing these Voices and seeing their forms is so other worldly and strange yet perfectly vivid and not coming from ‘me’, that it takes center stage of her existence and her life here on earth is a mere sidebar or side effect.

    I went through the same phase. I can’t help but wonder if she will come to the day I did when something big I thought was going to happen, because the Voices told so, didn’t happen, and from that day on, I lost all faith in the Voices as ‘my friend’, and began the process of re-conceiving them as a thought disorder. For her this could be any big event in her life that she really wants, but the hallucinations kept it from happening, and so she becomes disillusioned about them. That’s what happened to me anyway.

    Note from Michael: Your comment really drove home something for me, when you mentioned that one day she will be 18 and able to make her own decisions. I don’t know how to let go, which is probably why this feels like it will be forever. I can’t just hand her over to the world at 18, my job done. My job will never be done. I feel like I have to protect her forever. Of course, the reality is I will die one day. But letting go is a huge fear. I worry how she will do after I am gone.

  9. I would like that, if you would link your site to mine. I have you listed as a blog I read on my site, I watch for updates. You are doing so much to educate the masses. Thanks.

  10. Thank you.
    I always get so annoyed when people say they are “laughing out loud” or “have tears streaming down their face” in a comment on a blog post. I guess I just busted myself because I did cry while reading this. You are so real, Michael. Way back in the day when I started reading January First I got the idea that you were arrogant regarding a lot of things you knew nothing about. I stuck with it because I saw something in Jani in myself and I needed to know she was okay. Now I feel like I’m really starting to understand you and you have really won me over. You try to be tough sometimes to make yourself feel better, because you are sad, lonely, depressed, your marriage is strained and your child is broken. (By SOME people’s interpretation, anyway.) I hear you. I feel your pain. I don’t know if you remember my past comments but I’ve largely come out the victor on an ailment VERY similar to Jani’s, though mine was more so environmentally induced than genetic as hers seems to be, and I received no treatment up until the age of 17, and no effective treatment until my early twenties. It’s still hard every day but I’ve turned a corner and I’m in charge now, not Belinda, Tobias, Ralph, or the other “people” inside. They can scream all they want. I’d say my emotional maturity is probably that of your average neurotypical college freshman (I’m about to turn 26) and gaining all the time. I am happy with where I stand. I honestly believe Jani is going to get there no matter what the doctors or anyone else say. I was told the same things at times. You are doing what is right by not putting her in residential. That would be a good option only if the mental health facility standards of today could be trusted, and they can’t. Just keep fighting. You and I both know you wouldn’t have it any other way even if this is the end of you. I just wish my father could love me like this.

    Note from Michael: Yes, you are right, Zell. And you were always right about me. I can be arrogant, but it covers the massive amount of pain I live with everyday. I think over time I have gotten more confident that I can do this and so maybe I am not so arrogant anymore (at least for today 🙂

  11. I am in the process of creating my own blog about my journey with mental illness, and my family’s journey with 3 mentally ill children. It’s taking a bit longer than I had hoped, because I’m trying to balance school. I hope to be able to raise money for Jani’s Foundation,other charities that work for mentally ill children, and other families with mentally ill children. I just want to be able to give all the other children like me a fighting chance. This world is so negative, it’s hard enough to be accepted, but when you are mentally ill, your lucky if your family still accepts you. I’m not sure how I will raise money but I’ll try and find a way. On Jani’s Foundation Facebook page I read a note about volunteering. Is there still places where I could volunteer?
    I say it every time I comment on this blog, but thank you for everything you do with people like Jani and I.

    Note from Michael: Well, don’t raise any money yet for the Jani Foundation because we can’t accept them since we don’t have 501c3. If you are interested in volunteering, email me at michaeljohnschofield@me.com or susandschofield@me.com, let us know where you are located, and we will see what we can work out.

  12. Towards the end of my grandmother’s life, she would often experience memory blackouts that sound very similar to what Jani endures. She would become confused as to where she had last been, or what she had just done, mistaking delusion for reality. We made a chart for her out of a dry erase board. At the top we put the date, and then below we had 24 short columns in which we could write the highlights of each hour, such as, “took pills, went for a walk outside.” It really helped to ground her a little more, and writing an event on the board gave her something to look forward to as well as a sense of accomplishment. I wonder if something similar might work for Jani?

    Note from Michael: We had a version of that but we haven’t been keeping it up. We should again.

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