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No Deal (A Rebel Without a Clue)

 

Last week, I received the uncorrected proofs for my book, January First, which are known in the publishing world as “galleys.” It’s basically the completed book as it will look, except without my corrections of the “proof,” (the version that will actually be published and available for sale) and in paperback (the published version will be in hardcover).

 

The primary purpose of galleys is to be sent out to authors who have written similar books for what is called a “blurb.” A new writer must build ethos (credibility) with readers (because we have no previous books to point to) and the way this is done is try and ride to coattails of other authors whose books you have already read. The idea is that if David Sheff (author of Beautiful Boy: A Father’s Journey Through His Son’s Addiction) likes January First and you liked his book, you will probably like mine.

 

Whether David Sheff will read it, let alone like it, remains to be seen. He is on the short list of authors my editor is seeking a blurb from. What I can tell you is that one of the starting points when seeking blurbs is authors you personally know.

 

I know quite a few, a product of having been trying to become a published author myself for over a decade.

 

And this was how I got published.

 

Life tends to give you what you want. Just not on your terms.

 

David Sheff was a journalist and writer long before his son Nick evolved into a meth addict. That was his living. He actually got to interview John Lennon. He had written other books.

 

But Beautiful Boy is what he is known for.

 

He probably feels about Beautiful Boy the way I feel about January First: of all the stories we had in us to tell when we started as writers, this story was not one of them. These stories were not the stories we thought we would be telling. These stories are not stories we even could have dreamed of. Of course he knew meth addiction existed, just like I knew schizophrenia existed. But those are two things you never connect with your own children. When your child is born, when your child is growing up, your mind simply does not go there. It can’t. How the hell could you possibly see either of these things coming?

 

I still sometimes get asked (never to my face but usually on the Jani Foundation Youtube Channel) how we ever could have had kids, not one but two, knowing that there was mental illness in our families?

 

The answer is “You don’t think about it.” Humans tend not to think about things until it’s in our face. Mental illness was isn’t my face when Jani or Bodhi was conceived.

 

Sheff didn’t think about it either, despite his own rather extensive and somewhat heavy experimentation with drugs in the late Sixties and Seventies. He even tried meth. Once.

 

Looking back at my childhood, I can see now that my mother’s mental illness, her paranoia, her rages, her bizarre ideas, was staring me in the face the entire time. She even flat out told me, after recovering from chasing my out of the house with a butcher knife, that I should never have children.

 

I don’t know if it is arrogance of thinking that the sins of the parent will not be visited on the child. I don’t think so. I don’t think it is arrogance. I think it is another emotion: hope. You want to hope, you want to believe, that all of that is in your past. That you escaped.

 

In all human cultures the birth of a baby is a new beginning. Your life starts over anew with your child. Their birth is your rebirth.

 

And unless you are unlucky enough to face a life threatening illness with your baby at birth, the future is wide open.

 

The births of my children are the only times in my life that I felt the future was wide open. I didn’t feel it when I graduated from high school. Oh, I know the concept of it gets bandied about in high school and college graduation ceremonies, but it’s not really how you feel. I felt nothing but pressure every time I graduated, both from high school and with both my college degrees, the pressure to create my future. The pressure is there to figure out what the hell you are going to do with your life now, how to get to the next level.

 

For me, the birth of both my children was the closest to a moment of pure simplicity I will ever get. When I looked down at Jani and Bodhi for the first time, time ceased to exist. Everything from the past is forgotten and every worry for the future is erased.

It is a unique feeling, better than any drug I ever did as a teenager. It is just you, your baby, and the whole fucking universe at your fingertips. Endless possibilities, the energy of promise, courses through the body of your child and into your arms and rocks you back on your heels. You literally hold life, creation, in your arms. You want to lift your child toward the heavens and say, “This is my child!”

 

Anything is possible. Only good can come from this. The future is wide open.

 

Slowly, you lose that high. Only years later will you look back on it, as I did, and sadly realize you will never feel that again. There will never be that moment of total purity, of total faith, again.

 

For every parent, gradually, the future closes in, like the incoming tide. Even if your child doesn’t have schizophrenia or a meth addiction, restrictions close in around your child. That is life, sort of a twisted version of “Deal or No Deal.” Suitcases will be opened for you and your child. You will slam the plastic cover back down and tell Howie Mandel “No Deal,” even though you know damn well that that which each case you open, the odds of your “case,” your child, having a perfect future declines.

 

Except that in life you can never really accept the deal. You have to keep playing to the end. Or at least I do. And so does David Sheff.

 

And like the contestants on the game show, you delude yourself. You delude yourself that the case you hold is still the best one.

 

Actually, it’s not delusion. It’s hope. This is your child. You have to keep hoping. This is the case you have. You can’t choose another. One way or another, this is it. Whether the case in front of you has one dollar or a million dollars, it is yours. You have to play to the end.

 

For players on the game show, the worst is when the million dollar case is opened. They throw up their arms and turn away from the camera. Sometimes they will go to their knees, hand on their mouth, probably to keep from screaming.

 

Because the big dream is over.

 

They now know that whatever is in their case, it is not the million dollars.

 

The future is no longer wide open. It is restricted.

 

But then something amazing happens. They take a few deep breathes and they stand up and turn back to Howie. They go back to the game. And they start calling out numbers again.

 

I know it seems silly, but really it is a microcosm of life: you play the game, always hopeful, and then life deals you a devastating blow. You want to cry and scream. You want to slam your hand down on the table in front of Howie and curse your decisions, wishing you’d only chosen “14” instead of “2” because you knew, you KNEW you shouldn’t have picked “2.”

 

But like the game, you cannot go back in time. That is the first thing you have to accept. You cannot go back. Wishing you’d made different choices is pointless. Time is linear. You cannot go back. The Narrator in Robert Frost’s “The Road Not Taken”  never considers going back the way he came, which if one took the poem literally would be a viable option. No, the roads before the narrator are a metaphor for life: you can make a decision at any fork in the road, but you can never go back.

 

If we use “Deal or No Deal” as a metaphor for life (sorry, I’m not as eloquent as Frost- or Sheff, for that matter), there are only two ways out of the game: “Deal,” and accept what the Grand Banker of Life has offered you, or “No Deal” until there are no more cases to open.

 

For me, I’ve kept choosing “No Deal,” and it has cost me a lot. It has cost me the teaching career I had. It cost me financial security. It cost me the dignity of having to beg people on the internet for money.

 

Honestly, I really need to do that again because the book doesn’t come out until August and what’s left of my teaching career (teaching two classes online so I can be with Jani and Bodhi) doesn’t pay the bills. I don’t know how we will make rent next month, or the month after that, or the month after that. I need to beg for money. But I can’t quite bring myself to nakedly do it. So I’ll take the coward’s way out and drop this massive hint in this paragraph and pray that I can get enough that we don’t face eviction for the first time since moving back into one apartment.

 

I’m not a very subtle writer, either, if you can’t tell.

 

But I really have no right to complain. This was the choice I made and every choice has its own difficulties. Still, live by the sword, die by the sword. This is the choice I made to aid Jani’s stability. If it now turns out that she doesn’t need me like she once did and I cannot so easily go back to the life I once had, so be it. That is the consequence of how I played the game. Many of you, many of my friends, screamed at me like the peanut gallery on the game show, “Take the deal!” And I confess I never really looked over at you. I always knew what I would do. I didn’t like the “deal,” (which was residential). Plenty of other parents didn’t like that “deal,” either. But I arrogant enough to believe that people would always be there to support us if I didn’t take the deal. I freely admit it. So many times friends and strangers came to our rescue that it bread the arrogance that I could defy the odds time and time again. One day, that luck is going to run out, I know it. I know it will. It runs out for everybody in the end. I just had extraordinary good luck to have been able to invoke the generosity of good people for so long. But like everything else in life, eventually the restrictions come. Choices become limited.

 

Don’t worry. Jani will never go to residential. She is where she is today because we, with your help, got her here. It was interesting to watch the recent repeat of the “20/20” episode. I usually never watch a re-run of a program we have been on. I’ve never watched the Oprah episode again. I’ve never watched “Born Schizophrenic” again. I’m not quite sure why I never watch a show we’ve been on again. I suppose it is for the same reason you don’t look at certain photographs. You don’t want to see yourself in that place. I don’t want to be reminded of where Jani is.

 

I watched the repeat of  “20/20” only because I wanted to see what the anchor said at the end. I knew there would be no new footage but ABC News had called us for an update. I wanted to see what the anchor would say at the end, when he updated the story from its original ending.

 

It was hard to watch. We are not in that place anymore, neither physically nor mentally. It was gratifying to see how far Jani has come. She is so much more in our world than she was when that was shot in late 2009. She’s come a long way from that place. And just like my own youth, I want to run away from those memories (which is what made writing the book so excruciating-I had to relieve everything-most of which is not in this blog as the book ends in the summer of 2010 and I didn’t start blogging until spring 2009). It was not fun to relive how our lives were then, how in and out of it Jani was, how tormented by homicidal thoughts Becca was (she is no longer) and how tormented Brenna was (Jani and I ran into Brenna, now 16, at the mall with her mother in January-Brenna seemed happy. She was getting another ear piercing and was trying to convince Jani to do it-kinda cute).

 

Yes, there was some emotional satisfaction that things are better but it wasn’t a like your life before your child was born. I can’t completely say all of that is in the past forever. The future is no longer wide open, although it is wider again now than it was then. Even if Jani never returns to that again, there will be no return to innocence, either for her or for us. We lived that. There is no erasing that past. Like the birth of your child, what happens to your child, and to you in defense of your child, changes you forever. I am still closer to that guy asking Susan “Why are getting angry with me?” in the middle of the street than I am to why I was before Jani.

 

Maybe stuff just sticks to you more after you have kids. You no longer have the blissful ignorance that you can shake off the past and start again. Once they are born, there is no starting again.

 

So I had to watch it all over again (the first time I had ever watched any of them again). And then the update;

 

“They are managing,” referring to all the girls.

 

“They are back in one apartment. Jani is on medication (she was then, too) and no longer a threat to her little brother. As for her hallucinations, they are mostly girls who come for sleepovers.” Probably not an exact quote but close enough.

 

And so our lives over the past two years was wrapped in one or two sentences. I don’t think I could do that (but that’s why I don’t write fro ABC News). But TV needs “takeaways,” closure for the viewer, just like books. And that was a pretty good one.

 

I hated the first version, because it seemed so hopeless. Jani didn’t change during the course of their filming. Jani was stuck.

 

I liked this one because at least she was “unstuck” now. She is moving again. There is hope.

 

So I have to keep picking numbers and opening cases. I already know we won’t get the million.

 

But that was never the prize, was it?

 

In the beginning, you want the million.

 

In the end, all you want is the chance to keep playing.

 

I don’t know what’s in Jani’s “case.” I don’t know what is in Bodhi’s “case.”

 

Because I don’t have to open them yet. I am still playing the game.

 

There are still numbers on the board.

 

I know I’m not going to take a deal, but I still got a lot more cases to open. Everyday I open a new case.

 

Today Jani went to school and worked with her class, WITH OTHER KIDS, for an hour.

 

That was a pretty good case.

 

Tomorrow might be a bad case.

 

But as long as you don’t take the deal, there are always more cases to open.

 

The future may not be wide open anymore.

 

But it is still open.

 

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15 comments on “No Deal (A Rebel Without a Clue)

  1. Jani
    Uplifting. Less the gut-punch we’ve become used to in your other blogs.
    Fact is, the more I follow Jani’s story, the more I tend to think of her as a family member in some spiritual sense. I feel a personal responsibility to her. Not in any intrusive sense, you understand. I just want to do as much as I can for her.

    I’m sure others who’ve followed Jani’s narrative feel the same way. Jani’s become family.

    Note from Michael: I appreciate that, Carl. Susan said the same thing-this was less intense than my usual blog, which she was happy about. The intense ones are difficult for her because she is living it.

  2. Great blog
    Great blog, Michael. Please, keep on taking the “no deal” case–it is worth it. I know things happen for a reason, and maybe, one of these days, she will make a startling recovery because better medications are being produced as we speak. It just takes time and patience. I hope my donations have been helping–I will try to make one in the next month or so. Remember, Jani has partially-recovered due to you and Susan–so that is something to be really proud of–she was way more severe in the past. I have also preordered your book on amazon.com :)I hope everything is well at the moment.

    Best regards, Ruben Rafayelyan

    Note from Michael: Thanks, Ruben. I appreciate your support. Always do. Like Carl, you’re kind of extended family now.

  3. I gave what I could; I hope others do too.

    (Not entirely on topic, but I also hope PayPal continues to treat you well… did you hear what they tried to do to a Regretsy charity? I’m really worried about the possibility of them freezing your funds for no reason, as well… Regretsy switched over to using WePay, which so far seems actually reasonable.)

    Looking forward to your book; good luck with the edits!

    Note from Michael: Thank you, Morgan. It might be because Paypal now has to report annual transactions over a certain limit to the IRS. I reported everything.

    Switching from Paypal to something like WePay would be yet another in a long line of updates this website needs (for example, it still says Jani is six when she is nine now). The problem is that I don’t have my webmasters anymore to help me make changes so the site is a bit outdated in many areas. It gets the job done but there are a lot of updates it needs (it has never been updated since it was created back in 2009). I am hoping to find a new webmaster who will help me soon. Probably part of the reluctance is I can’t pay.

  4. We believe the best thing to do about your daughter’s condition were to buy her a cat for herself at home because we know that when she is around cats she does not exhibit the worst of her symptoms.

    Note from Michael: We would love to adopt a real cat but Susan is deathly allergic.

  5. Only just heard about you and your family. I don’t have much but i hope the little I gave will help. Sorry I couldn’t help sooner.

    Sarah x

    Note from Michael: Thank you, Sarah.

  6. Bodhi
    How old is Bodhi now? And what are your plans for him? Is he sz of Autistic? THANKS

    Note from Michael: Bodhi is four now. He has a diagnosis of mild to moderate Autism and I have no reason or desire to go looking for anything else. I am not sure what you mean by “what are my plans for him?” Ah, to have him grow up happy? I pretty much still take things day by day. Not a lot of long term planning here.

  7. students
    I heard you were a teacher… Have any of your students ever asked about Jani? Do you think they even know about Jani?

    Note from Michael: Surprisingly, yes. It hasn’t come up this semester because I am teaching online but surprisingly when I mention that my daughter has child onset schizophrenia at least one of them says, “Wait, weren’t you on Oprah?” They don’t make the connection right away but they do make it. Many of them saw the 20/20 or the Discovery Health special as part of their psych classes. So yes, once they realize I am Jani’s father, yes they do ask questions. And they are surprisingly in the know and very interested in her condition and her as a person. I find today’s students to be much deeper than older generations give them credit for.

  8. Wow!
    I’ve just discovered you, had no idea any of this was even going on until I happened to find an ecopy of the book for review–which I am going to be reviewing for my blog.
    I just want to say thank you for writing this book, thank you for not giving up, even though it felt like you might need to in order to keep your own sanity. I spent twenty minutes talking about your book last night, after reading it in a manic reading session.

  9. Reading January First
    I am reading the ARC of January First right now, and I have to say I am unable to put it down. It does have an error though. It spells Jani’s name with two n’s, “Janni”. Make sure to let your publisher know. 😉 Will have a review up this week!

    Note from Michael: Actually, no, that’s not a mistake. She was “Janni” until she got to UCLA in early 2009. They spelled her name “Jani” there and Jani liked it and we kept it. You will see. I talk about her name change.

  10. Ah!
    Ah! Well that would make sense, then. 😉 I am just under half way through but expect to finish tonight. 🙂 Thank you for clarifying it. 🙂

  11. You are amazing
    I stumbled upon your story while avoiding studying for my last exam, and I couldn’t bring myself to get back on track without somehow sending out a message to you and your wife. I am absolutely inspired by the love and commitment that you both have for your daughter and I hope you both realize how amazing you are as parents, and as people. Your story has inspired me to not take life for granted and to be truly thankful, even for the little things. I wish I could make a donation to your foundation, though, being a student, I have no money to give (though I’d gladly give you my books right now!). I will not forget your story and will donate the minute I have anything to give to you. That is a promise. Thank you, and take care!

    Note from Michael: Thank you, Adelle.

  12. Thank you!
    Michael-
    I just wanted to thank you for this blog. I saw your family’s story on TV quite awhile ago and have been very interested ever since. I have not been diagnosed schizophrenic (not yet)but I have been struggling with auditory hallucinations for quite some time now. Your blog has really struck me because I know my parents (I still live at home-I am fifteen) often feel similarly to you. I just wanted to say I think you are a very strong family and I wish you the best.

    Note from Michael: Thank you, Emily.

  13. I found your blog after stumbling across a rerun of Born Schizophrenic this afternoon, and remembered your family from Oprah. In the course of my work (ER RN), I have thought about your family periodically when a patient brings your story to mind. I’m happy to hear that there is an improvement in not only Jani but your overall family. I am terribly impressed with all that you and your wife have done to try to help your daughter and keep the four of you together. Keep on fighting for your family, and take time to celebrate your successes – no matter how small. 🙂

    Note from Michael: Thank you, Abbi. I must also thank all those who donated which helped us maintain the two apartments during the time we had them. We would not have been able to do this without all their support.

  14. I saw your show on TV and have read your blog. I don’t have anyone in my family that has a mental disability or illness. Your story has definitely provided me a chance to see the world differently and for that I want to thank you. I am in awe at your honesty, humility, and how open you are about your experience. I sent you what I could. I wish the best for you, Jani, and your family. Don’t stop telling your story.

    Note from Michael: Thank you, Jackie.

  15. How to live with schizoaffective disorder?
    I was just diagnosed with schizoaffective disorder they don’t think its full blown schizophrenia, but they are not sure yet i had it since 17 and all this time they thought i had bipolar, I started seeing things and hearing voices wich is scary, but they changed my meds from risperidone to prozac which meds whould be good to be on so i won’t gain weight? its the wrong medicine, they also said i was detaching and disoatioing what does this mean?

    Note from Michael: Well, these are questions you should be asking your doctor. I think weight gain would be less important than seeing and hearing things. As for what “detachment” and “disassociating” means, “disassociating” means not remembering what you did in a psychotic state, basically losing touch with reality. But what it means to you is unique to you. These are really things you need to ask your doctor about. Don’t just passively accept the diagnosis and meds. Ask questions. Ask what things mean.