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This Fire Grows Higher (Try to Fight It)

Latest Blog…”This Fire Grows Higher (Try to Fight It)”

 

I didn’t grow up in a musical household.  My parents had LPs, but they were all relics from the time before I was born. It was like they stopped buying music when I was born. When I was fourteen years old, my parents separated. If you want to call it that. We lived in Tulsa, Oklahoma at the time, the end of a line that had taken us from Sydney, Australia, where I was born, to Amsterdam, Boston, Dallas, Texas, back to Sydney, and then to Tulsa. In 1990, my father took a job in Minneapolis, 500 miles up Interstate 35 from Tulsa. He would drive up Sunday night, work the week, and then drive back to Tulsa on Friday for the weekend.

 

The idea was that as soon as the house in Tulsa was sold we would follow him to Minneapolis.

 

But that never happened.

 

One Friday evening my father arrived back home after the 500 mile drive to find a process server on our doorstep, holding divorce papers. We weren’t home. My mother had taken me, packed us into her Honda Civic, and driven across the state line into Arkansas. Her reason for doing this, as she told me, was that she feared my father would become “violent.”

 

My father had his moments. A few dishes got tossed in our house in the late 80s, but nothing more. There was no domestic violence of that sort, just the slow, smoldering hatred that slowly built over the previous decade.

 

I was not devastated. In fact, I was relieved. I had expected it for years and my only surprise was that it took as long as it did. My father simply refused to give up. It was my mother who pulled the trigger on the divorce proceedings. My dad couldn’t do it. I think she took me and ran to Arkansas because she didn’t want to run the risk that he would try to talk her out of it.

 

And I wanted it to be over. Not because I hated my father. Or my mother. I wanted it over because I wanted peace. They fought through most of my childhood and the most common subject of their fights was me. It was always about me (which perhaps is the root of my inflated sense of self-importance). That was a joke. Or maybe not. Of course, a child will remember all fights his parents had as being about him, but a lot of them were about me. It was always the same: my mother trying to argue that their was something wrong with me that needed fixing, or that I shouldn’t be allowed to do something (like eat sugar) with my father arguing my mother was overreacting, that I was fine, etc.

 

When the divorce proceedings went before a court, I was fourteen. I was old enough to make my own decision about who I wanted to live with.

 

I chose my mother.

 

I am still not quite sure why.

 

My father was the far more permissive parent. I could have had anything I wanted from him, something I very much exploited when he would come down to visit me.

 

But I did love my dad. Still do. I have many happy childhood memories of him. I remember riding around in a seat on the back of his bicycle as he rode through the tulip lined villages outside Amsterdam. I remember sitting on the hood of our 1979 yellow Volvo, parked alongside Schiphol International Airport, my dad holding a radio receiver between us, listening to the KLM pilots talking to the tower. I remember us building a giant model of an orange Braniff (remember Braniff?) 747 named “Fat Albert,” and then later repainting it by hand in the colors of Cathay Pacific. I remember him carving a M-16 out of a 2×4 with a jigsaw in our garage.

 

But I elected to stay with my mother. Who refused to let me eat any sugar, fruit, meat, bread, carbohydrates. Who was so convinced I was “overeating” that she drilled a hole through the handles of our twin fridge and slid a padlock through. Who when she caught me eating dry dog food because I was so hungry, instead of getting angry, confessed that she had done the same thing. Who took me for weekly enemas to “clean me out.”

 

Life was hell with her. I stole food out of neighbors’ garage freezers because I was hungry all the time.

 

Why didn’t I go with my Dad?

 

I still don’t know exactly why. Maybe it was because there would be many times in that last year I lived with my mother, that I would see her staring off into space at nothing in particular. Maybe it was because there were times when she didn’t even seem to know I was there. Maybe it was because even then I felt her withdrawing from “this world,” our world. She was going someplace else. I felt it every day. Maybe some part of me stayed because I believed she needed me. Because I was her last link to this world. As long as I was around, she had some responsibility to take care of me. I kept hanging onto this even as my mother unlocked the fridge, got out a few vegetables, and then retreated to her room, leaving me to cook my own dinner.

 

Once my father was gone, there was not much to do. My mother never asked me to do chores, but I did them anyway. I did all the chores that my father had once done. I learned to operate the ride-on lawn mower. I learned to clean the pool. I raked the leaves in the fall and shoveled the snow in the winter. I replaced him in every capacity except… well, you know. What mommies and daddies do. I was not in school. I had a lot of time on my hands and I spent in my father’s former study. He’d left everything behind. I read all the books he’d accumulated, ever Tom Clancy novel or Dan Brown paperback he had picked up to read on long flights to one business meeting or another. I read The Hunt for Red October cover to cover numerous times.

 

One day I noticed the record collection on the bottom shelf. I knew they were there but had never really paid attention before. I started pulling them out. An original copy of “Meet the Beatles” (too bad I had no idea then what that was worth). “Help.” Only years later did I realize that my father’s collection of Beatle records stopped before the “Sgt. Pepper.” My dad was never a hippie. He was already working full time hanging telephone wires for Telecom Australia by 1967. In 1968 he met my mother. They married in 1969.

 

There was also Willie Nelson, Waylon Jennings, and Merle Haggard. I was listening to “Mommas, Don’t let Your Babies Grow Up to be Cowboys” completely oblivious to Guns n’ Roses and U2.

 

My mother’s collection included The Carpenters and ABBA’s Greatest Hits. “Fernando” was my favorite.

 

A friend of my mother’s gave me my first two tapes: George Harrison’s Cloud Nine and Warren Zevon’s Greatest Hits. I remember listening through my Walkman, blown away by “Excitable Boy,” “Lawyers, Guns, and Money,” and “Roland the Headless Thompson Gunner,” which lead me to ask my mother who Patty Hurst was.

 

The first tape I ever bought was Billy Joel’s “Storm Front.” For my younger readers, there was a time, in the days before digital downloads, when you heard a song you liked on the radio and bought the tape or CD (we didn’t have a CD player) only to discover that one song on the radio, the single, was the only song you liked. For me, that was “We Didn’t Start the Fire” (although “The Downeaster ‘Alexa’” is not a bad song either).

 

“We Didn’t Start the Fire.” In 1990, all I knew was the song was catchy as hell and covered world history from 1949 to 1989.

 

I heard the song again for the first time in years just the other day.

 

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The year of my birth is covered by exactly five words:

 

“…Palestine, terror on the airline.”

 

In 1976,  the United Nations passed a resolution calling for an independent Palestinian State and a mix of Popular Front for the Liberation of Palestine and German left-wing revolutionaries hijacked Air France Flight 139 and had it flown to Entebbe in Idi Amin’s Uganda, where it stayed until Israeli commandoes liberated the passengers and crew and killed the hijackers.

 

But what really stuck with me this time is the last two lines of the chorus:

 

We didn’t start the fire.

No we didn’t light it but we tried to fight it.

Now I know that Joel wrote the song as a response to criticism of his generation, the Baby Boomers.

 

William Strauss and Neil Howe are (or were, as Strauss died recently) the premier researchers of American generations. Their seminal book Generations covers all American generations from the early days of the Colonies to the birth and childhood of the “Millennials” (the high school class of 2000).

 

Millennials were preceded by what Strauss and Howe called “The Thirteeners,” so-named because they are the thirteenth generation born under the American Flag. Born from approximately 1964 to 1981, we are better known by the somewhat derogatory term “Generation X,” although I don’t mind that title at all. In the early 90s, during the height of Grunge music, Time magazine bemoaned our generation as apathetic (we vote less that preceding or following generation). We were the “slackers.” We didn’t give a shit about anything or anyone. This was blamed on four factors: First, we were the first generation to experience the large scale divorce of our parents. Second, we entered a largely declining economy (with the exception of the Dot-Com Bubble of the late 90s/early 2000s, what a dollar will buy has declined every year since 1969). We were the first generation ever in American history expected to make less than our fathers before us. Third, we were born into what Strauss and Howe refer to as a “Spiritual Awakening,” and children born during this part of their four part cycle tend to grow up under-protected. We were the first “latch-key” generation. We played in the streets and our parents neither knew or cared where we were (no paranoia about child predators back then). Strauss and Howe argue this is reflected in the “Bad Child” popular in the 1970s like The Omen, The Exorcist, The Warriors, even the “Death Wish” series where Charles Bronson is forever plugging unruly teenagers. Very different from The Little Mermaid and the “Disneyfication” of childhood in the 1980s. Finally, we grew up when the Soviet Union was still around. Until Gorbachev, there were plenty of movies like Red Dawn and War Games to make us believe that nuclear destruction was very much a possibility.

 

My first thought when hearing Joel’s song again was “Why hasn’t a Gen Xer written a song like this?”

 

My next thought was:

 

We didn’t light it but we tried to fight it.

 

Really?

 

I found myself getting angry at this. You tried to fight it? Really?

 

In so many ways that song is classic Baby Boomer: Like Billy Joel in the video, you just sit there, watching, shaking your head as the world goes to shit.

 

You saw the entire second half of the 20th Century. As youth, you challenged and brought down the repressive institutions that your parents, the illustrious “War Generation,” refused to do anything about. You took to the streets for Civil Rights, Equality. In your youth, you fought the law and you won. You won the right to vote at 18. You got us out of Vietnam. You turned us away from the oppressiveness of the 1950s that you grew up under. Everything that is good about America today we owe to you. You showed us what people, what democracy, could do.

 

What the fuck happened to you?

 

You didn’t just “try to fight it.” You did fight it. Then you stopped. Why? You were on the verge of changing the world forever and you stopped. Why?

 

Whatever fighting you did was long over by 1989. By then you were just sitting there, like Billy Joel, watching the world burn, content to say, “It will still burn on when we are gone.”

 

Every time I talk to someone who has worked in the mental health field for many decades, they always say a version of the same thing: “We are still dealing the same problems we had forty years ago. Not much has changed.”

 

They aren’t talking about the illnesses. We still don’t know enough but we know more than we did then. What they are talking about is the lack of support for the mentally ill and their families. In the mid-1970s, a group of War and Silent Generation parents started meeting in each other’s living rooms to talk and commiserate about the lack of help for their now adult mentally ill children. Thirty-five years later we are still doing the same fucking thing, except that now our children are actually still children. Eventually, those parents formed NAMI in 1979, to provide the supports that didn’t exist. In 2010, we set up the Jani Foundation to do exactly the same thing, except now it is provide the services that our generation of parents can’t even get NAMI to do. We can’t meet in living rooms because we can’t leave our children in anyone else’s care so we support each other through online support groups and Facebook.

 

So Boomers, let me take a moment to sit down across the table from you in this kitchen. Let me tell you how the fire is still burning.

 

Jani.

 

I am not sure what direction she is going in, which is making it harder for me to follow.

 

Two major events are happening right now.

 

Jani suddenly doesn’t like herself anymore. Yes, I know she used to change her name all the time. She hated the name “January” and still does. But back when she was three and four changing her name, she was changing her name to things like “Hot Dog” and “Seventy-six” and “Blue-eyed Tree Frog.”  She wanted another world, a world that we would come to understand was Calalini.

 

Now she is not changing her name. Now she doesn’t like herself. Her as a person. When anybody asks why, she says “Because I have schizophrenia.”

 

Not the label. The disease itself. She hates the symptoms.

 

For the first time since she was three years old, she has become aware of herself.

 

She knows she exists in our world.

 

For those of you who still doubt that medication can work, there is your proof. She has achieved self-awareness.

 

How else do I know this?

 

When people first started recognizing her from the media appearances, she didn’t seem to care. She didn’t care about Oprah. She didn’t care about 20/20. She didn’t even care about “Born Schizophrenic.” The latter continues to air on OWN on a fairly regular basis and more and more people keep coming up to us, having seen it. A few months ago, Jani started to smile. “You saw me on TV?” she asked, a smile on her face. This was my first realization that she was even aware that she had been on and continues to be on TV. Every time we met someone, she would ask us to tell them what she had, and if we wouldn’t do it, she would.

 

The other day, a woman recognized Jani from “Born Schizophrenic.” She started talking to her, wanting to meet her, to get to know her. Jani screamed and hit her.

 

“I don’t like myself because of the schizophrenia,” she keeps telling her therapist.

 

Yet she continues to see and hear hallucinations. For a long time they were more background noise than anything else. Now they are coming back front and center again. And new ones are appearing, new hallucinations for the first time in over two years.

 

And when Jani is interacting (or getting me to interact) with her hallucinations, she is happy. When she is in our world, she is not. It used to be that there was no clear line between her world and our world. Now it appears there is. When she is present, she is very present. And she has achieved self-awareness. She knows she is different. She always knew she was different but it didn’t seem to bother her until now. We don’t know where this is coming from. Susan and I don’t see any reason why her illness should hold her back from anything. We don’t limit her in anyway.

 

Maybe it is because she has no flesh and blood friends. We continue to try but they all eventually go away. I know everybody loves the story of Jani and Becca, the idea of two girls with schizophrenia growing up with each other. But you can’t control life. Becca moved. Not that far away but we never see them anymore. From what I hear, Saphris has done wonders for Becca. And remember Becca was two years older than Jani. And Becca was always more present that Jani was. What you see in the Oprah clip is Becca before the Saphris. I think the Saphris has allowed Becca to resume growing up. And Jani got left behind. Justin Beiber means nothing to Jani.

 

But she is trying. She likes Florence and the Machine’s “Dog Days.” Of course, because it mentions the word dog. But she knows all the words to the song. She likes Phoenix’s “1901,” although she has a hallucination, a girl, named 1901. She can sing the words to that as well. She knows Foster the People’s “Pumped-up Kicks,” although she changes the lyrics to “All the cats with the scratch, scratch, scratch, you better run, better run, faster than my thorazine.” Because 400 still scratches her. My biggest hope is Death Cab for Cutie’s “You Are a Tourist.” She likes that song and doesn’t change the lyrics and it makes no mention of dogs or cats or numbers.”

 

I think Jani is trying to grow up. She is almost nine. Puberty is around the corner. I never thought she would become so self-conscious. In a way, it is a victory, as much as it pains me to see her dislike an aspect of herself. To be self-conscious is the opposite of psychosis. Now we are trying to remind her that one thing does not define a person.

 

So Jani has come back. She is different now. But she has come back and she is growing up.

 

But something else is happening as well. Today in Barnes and Noble, Jani pulled down her skort and underwear, convinced she was having diarrhea. She wasn’t.

 

This has been going on for a few weeks but it is getting worse. She cries and screams in the shower and put her hands up her bottom, convinced that she is having loose stool. My attempts to convince her it is just the feeling of the water running between the cheeks is for naught. Jani won’t go swimming anymore. That is how we used to get through the summer and now she won’t go. She won’t do anything that will make her bottom wet because she is convinced it is diarrhea. She screamed and cried all through her horse therapy this week. It was hot, over ninety, and she was sweating, which again made her feel weet.

 

But today was different because there was no physical wetness at all. It was a cool day. Her clothes were dry. She wasn’t even sitting on something cool. Yet she was convinced she was having diarrhea. This went on all day. She cried and shifted in her seat in the psychiatrist’s office, convinced again. She could feel it. But there was nothing there.

 

Tactile hallucination.

 

Feeling something that is not there.

 

I have never seen it this strong in her before. In my desperation to alleviate her panic (for that is what it is) I tell her even it was, it’s no big deal. I have crapped my pants on numerous occasions as an adult where I got caught before I could reach a bathroom. It happens. You just clean up. Jani wants to “clean up” all the time when there is nothing to clean up yet every time she gets in the shower or bath she is convinced she is having diarrhea.

 

It is a never ending tactile hallucination and we have no idea what to do.

 

School is out and her schedule is off. Summer school is only two weeks away but getting there is going to be hell.

 

And Susan and I are cracking around the edges.

 

You see, it used to be that we could trade off the “challenging child” for the “easy child.” Jani was work, constant work. Bodhi wasn’t. Except now he is. He will fly into screaming rages for no reason we can tell. He hits himself. This morning I woke up to the oven door open and him playing inside with his cars. I had already removed the stove burners and the knob that turns the stove on but this scared the shit out of me. Susan’s uncle, her father’s older brother, burned to death in a stove back in the 30s as a toddler. My father in law was the “replacement.”

 

Bodhi is fine as long as he gets constant attention.

 

Just like Jani.

 

But they need different attention. Jani needs animals. Bodhi needs physical stimulation like “Ring around the Rosie.” He needs to spin and climb and rough-house.

 

So we shuttle back and forth between two special needs children, without end, without break.

 

Susan suspects Bodhi has schizo-affective. I wanted to believe autism but the more I talk to parents with autistic children, the less of Bodhi I see in common with them and the more I see in common with Jani. He is just not as verbal and is not as able to articulate what is going on.

 

If you have ever wondered why Jani’s diagnosis was not a shock to me, it was because I knew. Deep down I knew. Deep down all parents know. But I knew because I had lived through it already with my mother. And if you wonder why I refused to send her away, even at the expense of Bodhi, it was also because of my mother. I failed to keep my mother from slipping further and further into her world. But in the end I could only do so much. I was the son. This time I am the father. I had to see Jani through, no matter what.

 

But the possibility that Bodhi might have a mental illness (and no he is not medicated-he is too young) has ripped me apart in a way Jani never did, never could have. I was prepared to follow Jani where-ever she went because she was my responsibility. But I thought Bodhi would be okay. I was fooled into thinking he didn’t need me because he always slept, while Jani never did, because he eats meat, which Jani never did, because he isn’t the sponge Jani was.

 

I was fooled. I needed to believe he was “normal” so I could justify the extra time I spent on Jani. I have always been affectionate and loving to Bodhi. He has never wanted for love. But time? Yes.

 

I know siblings of those with schizophrenia have a fifty percent change of developing a serious mental illness themselves.

 

I knew that.

 

But genetics skip. Maybe he might be depressed. Maybe even bipolar. But not hallucinations. Not disordered thinking. Not violence toward himself. Not no sense of his own well-being.

 

I didn’t want him to suffer like Jani has suffered. I wanted him to be free to enjoy his childhood.

 

And if you want to blame me for Bodhi’s deterioration, go ahead.

 

Because I deserve it.

 

You know why we had Bodhi?

 

We weren’t going to have a second child. But Jani was lonely. She would tell us that “nobody gets me.” No matter how many playdates we took her to, she would not connect with the other child. She would go off by herself, with what we thought then were “imaginary friends.” When she did play with other kids, she would get angry when they had to go home. “I hate you!” she would scream at them. When we tried to explain that we would see them again soon, Jani refused to believe it. For her, every playdate ending was always the final goodbye. And she would turn away, saying “Fine, I’ll play with 24 Hours.”

 

24 Hours.

 

A full day.

 

How interesting that she named a hallucination who never leaves, never has to go home, never has to eat dinner, never has to sleep, “24 Hours.”

 

We conceived Bodhi because it was the only way to give Jani a friend who would never leave her.

 

Sound horrible? People have children to provide a bone marrow match. It’s not that much different. We conceived Bodhi to save Jani’s life.

 

And I remember saying to Susan, “I hope we get another one like Jani.” I was willing to go through all the sleepless nights again if it meant Jani would have a companion who “got” her.

 

This was before I knew Jani had schizophrenia.

 

Susan actually prayed to God to give us another one like Jani. For her. So she would have a friend.

 

And now we know that God listened. God did make Bodhi like Jani. Not exactly the same. But something in him is growing, pushing its way to the surface.

 

Bodhi doesn’t have a name for what he has and probably won’t for years to come. But it’s there. Something is there. Not exactly the same. But it is coming.

 

A new war is beginning. And I have to go in after him.

 

I can’t fight two wars at the same time. Maybe I could if Jani was doing okay but she has taken a turn for the worse again. Better and worse at the same time. She is a rose that I cut myself on her thorns.

 

I am not yet bleeding on the outside for Bodhi. Maybe I never will. But I am bleeding on the inside. My best intentions laid to waste.

 

So I am going to hell. At least I don’t have to worry about the rent, I suppose.

 

Oh, yes I do. I still have to carry on.

 

I will have to give more time to Bodhi and pray to God that Jani doesn’t get worse without me around as much.

 

I cannot fight a war on two fronts.

 

Three if you count the lack of money.

 

So that’s my story, Mr. Joel. That is the fire going up behind me.

 

No, you didn’t start it.

 

Where were you when Reagan closed down the state hospitals?

 

Where were you when Nixon collaborated with Kaiser Permanente to create the current insurance system where insurance companies and not doctors determine care that is given?

 

Where are you now that you own generation, now a plurality in Congress and the State Houses, continues to hack away at mental health care services?

 

Where were you when Seung-Hiu Cho shot and killed 32 people at Virginia Tech, even after he was referred for mental health services, because the contracted agency, much like the Santa Clarita Child and Family Center here, didn’t think he was their responsibility to follow up on?

 

Where were you when Jared Loughner, who had been in a state of rapid decline for more than a year, killed six people including a nine year old girl?

 

You didn’t start the fire?

 

No, but you are the fucking ones in power now. And you are squandering it over petty fights about taxes and debt ceilings. In your youth, you changed the world and now you sit there while it comes to its knees.

 

I may be Generation X, but I am no slacker. Like the rest of my generation, I am pragmatist, a problem solver.

 

No, the fire will not keep burning.

 

Because we will put it out.

 

Even if it kills us.

 

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24 comments on “This Fire Grows Higher (Try to Fight It)

  1. With Jani’s new dislike of herself, I think you hit the nail on the head when you mentioned she’s nearing puberty. Puberty comes earlier and earlier these days – I was born in 71 and got my period when I was 11.. I wouldn’t be surprised if that’s the average now, with some girls even younger. Anyway, my point is, it’s just that’s she’s growing up. There’s no specific “cause” of it, it’s just something she’s going to need to work through, with you and Susan’s help. She’s getting a sense of self, but she can see she’s different – she’s not stupid – and like any kid, she’s blaming herself. Hopefully she’ll work her way through it. It bothers me that she dislikes her self – it makes me sad, but at the same time, that there’s even a “self” to dislike, is progress, and that gives me hope for her. My two cents is you just gotta let her know the beautiful, wonderful things about herself, and let her know that schizophrenic girls do grow up to have friends and boyfriends and lives. If you haven’t already, look up rachel star on youtube. She’s got schizophrenia and she’s doing well right now and has been for a while. She’s even made a film and got her own imdb page. Let Jani know that life is possible even with schizophrenia, and just keep reinforcing the good things about her, and hopefully she’ll work through this self-dislike phase.

  2. Michael, I can’t even begin to imagine what you, Susan, Jani and now Bohdi are going through. I am just a “shoulder” for my sister Jenn. I wish I could be of better help for you right now, as you have been for my sister within the last couple of weeks. It is soooo easy to rely on the “experts”, as you and Susan are for us, and to lose sight that the very reason you ARE the experts is because you are ALSO walking the walk right beside everyone else, at the same time. I have no words of wisdom for you. For you and you only know your children best. For my sister, it’s not the “fires” that she has to put out everyday, it’s the overwhelming sense of drowning from all the water she has to use to do so. Everyday, hoping for calm waters and no raging rapids is the best that she can do. The best I can do, as a bi-stander, (in another state to boot), is to throw her a life preserver once in a while, offer to stay on the phone with her for hours, allowing her to cry, yell, vent – all the while trying to catch myself from giving advice that I have no business giving, because she’s already thought of it and is constantly two steps ahead of me in that department.
    So this is my lame way of throwing you a life preserver. I know you and Susan don’t know me (or Jenn for that matter) from Adam, but I have big ears and even bigger shoulders, ya I kinda look funny, hehehehe. When you need someone to just listen, not judge, not give advice that really isn’t wanted, not to ask questions, etc. – just give me a call. You have my number. This is all I have to offer the most wonderful people in the world in my eyes. The people who are helping my sister try to “save” her child. So, keep your chin up when you can and just give me a call when you can’t. Sincerely, Michelle :0)

  3. I like the previous comment. That does sound like progress to me too. She is nearing puberty and it makes sense. Sincerely hope and will be praying that tactile hallucination leaves Jani. Schizophrenia is present in my family as well as bipolar and severe anxiety. I inherited severe anxiety although I feel almost fully recovered for the past 2 yrs. I hope my 2 yr old daughter never has to experience any of these either. Praying (sincerely praying!) that there are good things around the corner for your family.

  4. Just a thought…
    Is there any chance Jani has hemorrhoids? Sorry if you already checked this off the list. I remember when I was small and got them, it constantly felt like I had something going on. Maybe the feeling of it could be triggering the hallucinations?

    I hope you and Susan don’t take the people seriously who try to blame you for the illnesses your kids have. Besides, you have two beautiful children and I think the world is better off with them in it, no matter what they may be diagnosed with. I know tons of families who had the second/third child to give a friend to the first one. You guys didn’t do anything that any other parents wouldn’t have done. I know for a fact my mom tried to give me a sibling because of the issues I had myself, the only thing that stopped her was cancer.

    I hope that whatever Bodhi does have, it is nowhere near as hard on him and the family as what Jani has to go through. You all deserve a break in the biggest way. I wish I lived closer, though I don’t know that I could give Jani the care she needs, I might be able to babysit Bodhi a few days a week to give at least one parent at a time a “break”. Or give the three of you some time together.
    I don’t have anything as serious “wrong” with me, but I still find myself breaking and giving in all the time. I wish I was as strong as all of you.
    (And whatever anyone says, good for you for sticking to your guns and not sending Jani away. Yeah, that can help some kids. But if it isn’t right for your girl, then that’s that. I can’t believe some people really think that by reading your blog, they actually know the ins and outs of Jani’s life and her needs.)

    Note from Michael: No, I hadn’t thought of that. I have to schedule a doctor’s appointment for her so I will bring that up to her doctor. Thanks, Rhea.

  5. I’m buoyed to hear of Jani’s new self-awareness. That is huge. I’m sorry to hear about Bodhi.

    You always knew, with Jani. I mean maybe you didn’t know what “it” was, but you always knew something was different about her. Have you always known with Bodhi too? You say you were deeply invested in him being “normal” and it sounds like you’re now facing something head on that you actively avoided for some time…but even in your avoidance did you know, deep down?

    Note from Michael: I don’t know. I don’t think so. Yes, there was his speech delay and other developmental delays but Jani had none of those things. I don’t know what I knew or didn’t know. I still don’t know. Susan is pretty convinced he has something along the lines of schizo-affective. I am still hoping no. There is something but I don’t know what it is. I just want to see him start to play with other kids.

  6. I imagine you get sick of me posting back to your posts with my vignettes, but this one I think I can maybe give an insight that Jani can’t, not because of her schizophrenia, but because she is balancing on that thin line of child and pre-teen. I can say something not because of Pickles, but because I was an almost 9 year old little girl who was almost as “different” as Jani. Only my difference was bodily different, not a mental difference. But it was just as out there. In my scrapbook of childhood there is this wonderfully horrid photo of me, with that God-Awful Dorthory Hammil bowl haircut, holding a Christmas present with my swollen, chubby, twisted/deformed fingers. It’s not an embarrassing photo that someone took of me on Christmas morning, its in black and white with a caption underneath talking about it will be the first Christmas in many years that I would be opening my own presents. That caption ends with “Courtesy of the AP” and it, along with it are copies of several letters from people all over the country who saw the story about this little 5 year old girl who has spent a long time in the hospital but who because of a magic new medicine…blah blah…yadda…yadda. Over the years I was Grand Marshall for charity events, I was on the news at least 4 times that I can recall.
    I was also teased at times, tormented at times, and alone in a room full others at times. For the same reason that I was in the paper, on the news and in the charity parade. I hated being different. And I hated it when the day after being on the news I got some lame note on my desk from my teacher saying how she saw me on the news and how brave I was, and how proud she was to be my teacher. I hated it all. Because all it did was put my difference ahead of “me”. Now, don’t read into that anything about your having Jani on Oprah, or 20/20, or on “Born Schizophrenic”. Nope, not at all. Because….because…
    For as much as I hated it then, now when I look back I realize that my parents agreed to have me on the news, they agreed to have me participate in charity parades because it not only helped spread awareness for a disease that, much like we hear about our girl’s illnesses, is something kids just don’t get. So by putting me out there opened the eyes of people that just because you’re under a certain age doesn’t mean your immune. And that awareness, that advocacy made it a little less bumpy for the parents, siblings and kids who came after.
    Most importantly though is that while I spent many, many, many a sleepless night crying into my pillow because I was not invited to this party, or because no boy in my Jr. High or High School would come near me with a 50 mile pole for no other reason than I walk funny; while I was depressed, forlorn, and drowning in self-loathing I was also learning. I was learning how to be ok with handling my own feelings, and learning how to be ok with me. What kept me away from getting too far into the self-loathing, what kept me from knotting the noose, or from emptying every prescription bottle in the house when I ended up having a pity date take me to Prom, (the brother of another kid with my same diagnosis who lived in an entirely different state, but whose Mom just so happened to have business in town that weekend so…) What kept me so I can babble away here tonight, was my parents, my younger sister, my extended family, and the family I had been given through those news programs, AP stories, and the rest of the advocacy stuff my parents did. That is what kept me as ok as possible. And it’s that same basic thing which will get Jani through these years of “I hate myself” and the “I suck because”.
    Jani will get through it, even though her [u]because[/u] is written in all caps, she will get through it. And she will do so because she has tremendous advocates in you and Susan. She will get through it because she has a little brother who will be there, in whatever capacity he can be. Jani will get through it because she, and Pickles, and Lily, and A, and the other kids will have each other, even if its just swapped videos to each other, emails, FB groups, they will have that connection.
    I’m not sure if this rant made any sense, if it was at all a positive energy vibe sent along cyber wires between my laptop to yours, not sure. I hope it did. If not, if it again made no sense and did nothing but kill a minute or two of your day, smile nod and walk away. 🙂 🙂

    Note from Michael: Kirsten, I could never get sick of you and Pickles 🙂 Your vignettes are always more than welcome.

  7. self-esteem
    I would love to talk to Jani. I’ve been where she is now, and still do time to time.

  8. Re: Mer’s Comments
    I agree with Mer’s Analysis. But don’t blame yourself for either of your children’s difficulties. Nature caused them–not you, not Susan. And neither of you deserve anything that has happened.

    I’m sure that both Jani and Bodhi will improve as time goes on.

    You folks are doing everything right, in my opinion.

  9. I understand Jani
    Hi, I’ve read a lot from your blogs, and seen some clips from Oprah, etc, about Jani. I have schizoaffective disorder and borderline personality disorder, although diagnosed in my early 20’s. I am also working on a disseration at a big ten university on the deinstitutionalization of the mentally ill. So, I am both a patient and a researcher. Everything you say about the mental health system is true. The only way I am able to function as I do is because I have therapy 3 times per week, take lots of meds, and have other adjunct treatments as well. All this as you can imagine costs lots of money (even with insurance) and therefore my husband and I will be in debt our entire lives, if we don’t go bankrupt. What is important is that I feel I can understand Jani, how she feels about other people, about her hallucinations, etc — and I am not as sick as she is. If I were as young as her, I too would need to hit, or blank out, and only eat certain foods, etc. I am absolutely livid when people tell me what I see isn’t real — because it is to me. Its just hard to explain, but I think you know what I mean.
    Also, because I saw a Youtube on Jani in therapeutic riding, I am now also in a therapeutic riding class.

    Note from Michael: Thank you. I always love to hear from adults with schizoprhenia or schizo-affective because it gives me hope. You give me up. You are functioning. I know it is hard as hell, but you are still here, still fighting it out everyday. I admire that so much and it gives me hope to carry on.

  10. donation question
    Michael,
    I’ve been reading this blog for a while now, and a piece of my heart is with your whole family. I have a question about donation – I don’t have a credit card,don’t have PayPal, and I live in Canada. Can I send you an interac email transfer? I don’t care about the fee. Can you please give me an email address for that purpose?

    Note from Michael: Yes. I just emailed you. Thank you.

  11. Question..
    Maybe now that Jani is more aware.. It would be a good time to let her see another Schizophrenic girl.. u noe?… I know u have done that in the past… but now since she is more aware u noe?

    … (NOT BEING A SMAT ASS!!!)..What is ur plan for Bodhi? like.. Since you know that there is something wrong.. Are you going to take him to a psychologist at UCLA?.. or somewhere else?.. What is next for Bhodi?

    When is your book gonna be out?.. cuz im going to wait in front of the bookstore all night for it! hahah

    -Anonymous

    P.S.. I LOVE DEATH CAB FOR CUTIE AND PHOENIX AND THAT ONE SONG DOG DAYS ARE OVER!!!!!! OMG!!! that is sooooooooooooooooo cool that she likes that kind of music!!! She is gonna be one little rocker girl when she gets older!! haha

    I don’t know how you are going to deal with 2 severally mentally ill children.. but… You are a soldier Michael… I’m sure you will figure it out!!

    (hope u listen!! 😉 )

    Note from Michael: Jani has been exposed to other schizophrenic girls before. Where-ever and whenever we can find them. We try to find her friends all the time, mentally ill as well or otherwise.

    We don’t have a plan for Bodhi right now, other than to keep watching him.

    My book is scheduled to be out next March but we will see. It depends on when the publisher accepts a final draft for publication.

  12. support person
    Thank you for all you have shared with all of us You have enlightened me and I will write more in the future to let you know how but I have sent a small donation through the mail and more will come in the future You may do what you like with this small amt of money Thanks Barbara

    Note from Michael: Thank you, Barbara.

  13. Confused–dont know if i was kicked off I sent a donation via mail to where you work–I read your blog all the time I will write again in the future Thank you so much Barbara Piazza

    Note from Michael: No, all comments are held pending approval. I do wish the system would notify people that their comment has been received. At any length, thank you.

  14. goodnights?
    Just a thought what about putting Jani in those goodnights disposable underwear throughout the day. She’s not actually messing herself so she wouldn’t go through that many a day. It wouldn’t help get rid of the hallucination but maybe it would help ease some of her anxiety about it if she knew she wasn’t going to mess her clothes if she did get diarrhea.

    Note from Michael: I appreciate the suggestion but I don’t think it will work because it is not actually fear of messing her clothes that she is scared of. She is scared of diarrhea itself. She is scared of the event, not the result. That is the main thing. I also don’t want to exacerabte anything but putting her back into pull ups when she is almost nine. Don’t want to psychologically put that on her. We have increased throrazine and it seems to be helping a little bit. She doesn’t go into these panic attacks after the thorazine but long enough between doses she does.

  15. I have never commented on here before but I have donated. I have schizophrenia and hear and see things. After 5 years of being drugged and not having any hope I was inspired by the movie “Beautiful Mind”. Slowly I started playing a game to see how long I could go without communicating with what I saw around me. After about 2 years of playing this game I I was able to get and hold down a job. I still see and hear things daily but playing the game seems to work for me. Maybe jani should try to play. Since she’s hates what she has maybe she could try not to interact.
    Finally, look up sensory processing disorder, she shows aspects of this anyway perhaps there is something there with her current diarrhea issue.
    I do hope things get better as they get older. I am in a job that requires tons of multiple tasking and makes my brain go fast enough I dont see or hear things as often during work hours.
    Not sure if it will help but maybe try to play the game. The man who Beautiful Mind is about is a genius just like Jani. I hope she knows that.

    Note from Michael: I never recommend anyone go off medication but I certainly give you immense credit for what you have been able to achieve. You should be extremely proud of yourself. Fighting this disease is hard enough. Fighting without meds is even harder. I am sure that what you describe will happen for Jani as she gets older. Right now she is still a child and her hallucinations are her friends, so she is unwilling to not interact with them. But I do agree that when she is able to work that will help. Even now when she helps me at the shelter or at the ranch where she gets her equine therapy, the hallucinations get pushed into the background. Keeping her really busy is also the only way to really block the tactile hallucination of diarrhea which is the biggest issue she is having right now.

  16. Dear Michael, this post brought tears to my eyes. I cannot believe what you described going through as a child. My heart breaks for what you and your family are going through right now. I wish I could do something, but for now it seems, I read, helpless, and share your story with others. Awareness is key. I’m looking forward to getting your book – the very first day it is available! For now, you are in my daily thoughts and prayers – always.

  17. I have never seen or heard a person as ignorant or misguided about mental illness as you. You, are a borderline patient. (Evidenced by much of your writing) That experience would do you the world of good….you’d stop regarding the mentally ill as ‘the other’….and recognise that trauma, violence, (verbal or physical) can be triggers for mental escape. i.e. You bear much responsibility for your daughter’s state of mind.

    STOP SPREADING MISINFORMATION REGARDING SUICIDE BEING THE BIGGEST KILLER OF DIAGNOSED SCHIZOPHRENICS. IT IS NOT TRUE.

    Stop regarding anyone who criticises you as being a jaded ex patient. You claim to be fighting for patients’ rights. You contribute to stigma- YOU don’t help it.

    Your lack of parnenting skills is galling. Your hero worshippers don’t see through you – I do.

    Your ignorance is beyond words and your exploitation of your circumstances is reprehensible.

    Ps. You’re a rotten writer….full of shallow emotion and poor analogies. I stopped relating circumstances to music when I was a teenager. Get real, grow up, get off the net and look after your daughter, son and wife properly. Provide for your family and stop begging. Most people in this world are many many times worse off than you can EVER dream of.

  18. To Miss, With Books and Rants
    Sorry you feel that way Miss, but not to worry, I’ll just go out and buy TWO copies. That way there’ll be none for thee and TWO for me! Now, if you do some research and read Jani’s story and decide to change your mind, I will send you my extra copy free of charge. That’s fair,isn’t it?

    We Jani-boosters are nothing if not fair:-)

  19. I hope I am misunderstanding and you are not blaming Billy Joel for changes in Government and health care. As far as state hospitals go- they needed to be shut down , they were underfunded, poorly staffed, and more often than not their “patients” suffered cruel and unusual treatment. Isn’t the unknown why you don’t send Jani to a state institute? (Aside from them being far away from where you live now, but if you are on the verge of loosing everything as is, I’m not sure that a move would be that out of the question anymore)

    Note from Michael: Yes, Billy Joel is the cause of the all the problems we have today 🙂 Yes, you misunderstood that. I was attacking his generation for its failures, not him specifically. Yes, abuses occurred at state hospitals (but nearly as often as the ant-psychiatry crowd would have you believe.” Yes, there were better options. But those better options were never funded. So the plank was dropped and nothing replaced it. There are no state hospitals left. They are all privately run facilities that got the contract by offering the cheapest bid.

  20. Speechless
    Michael and Susan I am in awe of all you deal with. I don’t know much about the future, but I do know you will not always have financial problems. Michael you are a BRILLIANTLY talented writer. Really. Your book(s) will bring you financial stability (and awareness to those of us who read them). Along with all that tortures her, maybe Jani also has your writing gift. If so, maybe it’s not too soon for her to start on her own book project.

  21. Eloquent
    Powerful writing. Truly eloquent. I have never in my life read such powerful words. Yes, I get it.