Although Susan wishes I wouldn’t, I do, on rare occasions, read my “bad press.” One of the “side-effects,” I suppose, of the internet is that it gives people the anonymity to say things that they would never actually say to your face. In essence, it gives them the ability the say anything they like to those at any level of public consciousness without fear of actually having to answer for it. The first time I experienced it, obviously, it came as a bit of shock, not because I figured every one would love me but because I assumed they would focus on the issue of childhood mental illness and not go instantly to personal attacks. The LA Times reporter regretted that she hadn’t prepared me for it, telling me that such attacks are par for the course and have happened to her on every story she has ever written. Amusingly enough, what finally enabled me to get over it was reading the comments left on NFL.com and CBS Sports.com. Having gone to high school in Minnesota, I adopted the Vikings as my football team (and I must thank the Vikings, Adrian Peterson, Jared Allen, and Brett “Old Man” Farve for the wonderful distraction that their team provides me). In reading articles on sports websites, I noticed that the slightest criticism by a writer of a team’s performance led to anonymous fans telling Pete Prisco at CBS Sports that he had no business being a football analyst and that CBS should fire him immediately. And this is football, people. I can understand why people sometimes criticize me but criticize Prisco because he ranks the Jets below the Saints? And so I realized that if people are going to call for the head of an NFL analyst just for picking against their team, I should not be surprised by the fact that a few people are not going to like me.

Most of the attacks against me have come as a result of me being overly dramatic in my writing (the “starving” and “hitting her as hard as we could” are the two most egregious examples). Such writing is unfortunately a legacy of my training as a writer, which occurred long before Jani, as well as my own tendencies developed from my favorite writers over the years. Such writing captures the emotions of what I feel, or in those cases felt (powerless to affect any change in Jani’s behavior) but is not appropriate in cases such as this where no drama is necessary. I don’t intentionally try to pump up the story. I am just writing what I feel, and what I feel is often worse than the real situation. It is has been a hard habit to break and I am still working on it.

Part of my surprise then was that there were people who took every word I wrote literally and tend not see the “spirit” in which it was intended. I now get somewhat perverse pleasure from the fact that the people who hate me hang on my every word far more than those who sympathize with me.

One question though that has bothered me is the handful of people who have questioned, on the Oprah boards and elsewhere, why in God’s name Susan and I would have had another child when we “knew” (apparently) that Jani was mentally ill.

This bothers me most particularly because, putting aside that condemning us for having Bodhi gets uncomfortably close to eugenics, it seems to suggest that Bodhi should not have been entitled to a life because his older sister is severely mentally ill.

The flipside of this is those who have suggested that by trying to care for Jani on our own, we are robbing Bodhi of a life and therefore should forget Jani, sacrifice any future she might have, and send her thousands of miles away to residential.

So either we never should have brought Bodhi into this situation or we should cut bait now with Jani and exclusively focus our energies on the “normal” one. These people seem to see only a binary: one child or the other, but not both.

Sophie’s Choice.

The title of William Styron’s book has become an idiom in our culture, meant to refer to having a make a choice between two equally horrible options.

In other words, to quote Simon & Garfunkel “anyway you look at it you lose.”

Interestingly, schizophrenia makes an appearance in the book as well. Stingo, the narrator, meets Sophie and her partner Nathan in a Brooklyn boarding house. Their relationship is tempestuous to say the least. Nathan claims to have graduated from Harvard and work as a cellular biologist at Pfizer. It turns out that both of these things are fabrications. Nathan was indeed brilliant and could have been what he claims to be, but in truth he suffers from paranoid schizophrenia which almost nobody, including Sophie, know. Styron’s portrayal of schizophrenia is fairly honest in the sense that Nathan has periods of friendliness and generosity, followed by sudden outbreaks of jealousy, violence, and delusional thinking. Styron at least gets that those with schizophrenia are not psychotic all the time.

Even if you have never read the book or seen the movie, you know the term and what it means, so I don’t feel bad revealing what the “choice” was. Arriving in Auschwitz with her older son, Jan, and her seven year old daughter, Eva, Sophie was confronted by a sadistic Nazi who forced her to decide which one of her children would go immediately to the gas chambers and which one could remain living.

What would you do in such a situation?

The first instinct, if you truly love your children, would be to refuse to make the decision, at which point Sophie herself would have been shot, leaving both her children as orphans and, worse yet, possibly sending both to the gas chambers.

It is impossible as a parent to choose between children, yet one must also consider what will happen to one’s children after one is gone. Who will take care of them? For nobody will ever love them as much as you do. It is impossible. So what do you do?

Sophie, as the title implies, despite the agony, does make a choice. She is acutely aware of the outcome of refusing to make a choice, and faced with both of her children being dragged off to the gas, chooses to save her son, Jan. It is Eva, just seven years old, that is taken away, screaming for her mother, to be killed.

This choice is not without its consequences, as no choice is. Sophie is wracked by guilt and self-loathing for the remainder of her short life, which is why she chooses to self-destruct alongside Nathan than choose life with Stingo.

Simon & Garfunkel were right in “Mrs. Robinson:” anyway you look at it you lose. No matter what choice Sophie made, be it sacrifice Jan, Eva, or herself, she was going to lose. The consequences, no matter what choice, were all equally terrible. The selfish act, I suppose, would be to refuse and take a bullet standing there on the train platform. At least then she would not have had had to carry the guilt for the remainder of her life. But that isn’t a good choice, just a selfish one.

Parents of severely mentally ill children who have other children face this choice every day of our lives. But like Sophie, none of us expected we would have to make such a choice. None of us thought we were going to wind up on a platform outside Auschwitz with a proverbial gun pointed at the head of one child or another, having to make a choice.

What those who wonder why we had Bodhi don’t realize is that when we decided to have Bodhi, we did not yet know Jani was mentally ill. Jani was four when Bodhi was conceived and at that time Jani’s behavior was odd (changing her name constantly, refusing to play with kids she had once liked, constantly playing with imaginary friends, screaming for no reason, running behind store counters and saying “I’m sixteen! I want to work!) but not psychotic. At that time, we were still justifying Jani’s behavior as something she would eventually grow out of. She was not yet violent.

In the Spring of 2007, Jani was odd, even eccentric, but not yet mentally ill as far as anybody was concerned. She was just a brilliant child that nobody understood. We just thought she was too advanced for most kids. It would only be later, once Susan was pregnant, when we put her together with other genius kids and Jani failed to connect with them as well, that the first inkling of fear began to creep in. But we were confident that the birth of Bodhi would mature Jani, that she would respond to him and want to teach him everything she had been taught, that she would find in him another human being other than us that she could connect with.

The truth is Bodhi owes his existence to Jani. We were not going to have another child, but through the Spring of 2007 Jani kept coming to us, telling us how lonely she was, how desperate she was for other kids who would “get her” (her words), how other kids were “13s” and she was an “18.” During the months leading up to Bodhi’s conception, she was getting more and more depressed, no matter how much effort we put into trying to find her some happiness. Time and time again we got together with either kids she had known for years or new kids we thought she might like and watched painfully as Jani ignored them and wound up playing by herself (or so we thought-she was actually playing with her imaginary friends).

So we made a choice. We decided to give Jani a sibling, someone bound to her by blood, who would always be hers. We did not make this decision without consulting Jani. We asked her repeatedly for weeks whether she wanted a sibling. The answer was always yes, without reservation. I think she believed that we would create another version of her. I think she had come to believe by then that since she could not find any other children like her, perhaps we could create one for her.

And, I am sorry to say, that was our goal initially. To create another version of Jani. What we did is no different from parents who have a second child in order to provide a bone marrow donor for an older child with leukemia. Yes, you love that second child equally, but that second child was born out of a desire to save your first child. And Jani’s depression and isolation was getting worse. We believed we needed to have another child to save her.

We made that choice, and like all choices, it is not without its consequences. I learned very quickly that Bodhi was his own person. Unfortunately, so did Jani. I do not expect Bodhi to save his sister. But as to whether he can, the jury is still out. My only hope is that in forty years, when I am gone, that he will love his sister and look out for her, not out of a sense of obligation but because he wants to. And I hope that in forty years, when I am gone, Jani  will be around to feel the love that her brother feels, and that she can return it better than she can today.

That is why we got the two apartments. We wanted Bodhi to grow up with his sister, but not in fear of her. We wanted him to love her as we love her and we wanted her to love him as we love him.

And it has worked, spectacularly worked. Jani’s terror of Bodhi getting into her stuff is mitigated. She doesn’t see him as a constant threat. She shares her food with him, breaking in half a donut to give him half. At the end of psychiatrist and therapist appointments where she is allowed to choose a cheap toy, she always also chooses one for Bodhi (without any prompting). I have never asked her to remember Bodhi yet she always does.

She tells us when her hallucinations want to hurt him.

And Bodhi always smiles big when he sees her and starts dancing around her. He loves her.

Susan and I stood on that train platform and were asked to make a choice and against all odds we chose a third option, to have our children live apart but still close enough to spend a lot of time together.

For awhile, I thought we had done it. I thought Susan’s idea would keep us from having to make a real Sophie’s Choice.

But now the Nazi with the gun has come back again, but this time it isn’t Jani’s illness. Jani is relatively stable.

Still, the consequence of that decision has finally come home to roost. Yes, there are always consequences. There is a still a Sophie’s Choice because no matter what we choose, we lose.

I can’t pay the rent anymore on both apartments.

Because I took family medical leave this fall to focus on trying to get Jani stabilized, because one of my former departments at my university (not English) pulled my appointment letter (what guarantees me the units and therefore pay) before my leave was approved, leaving me several hundred dollars short a month of what I needed to make rent on both apartments, because Susan and I had to bounce our checking accounts just to pay rent, utilities, and put food on the table, starting a vicious cycle that put us down hundreds of dollars every time I got paid, because even if Jani had stabilized enough for me to return to teaching in the spring I got no offer of classes, because we have never taken a cent from any of our media appearances, I have reached the end of the line. Last month, the rent check for Jani’s apartment got returned. We knew we were short, but we hoped Bank of America would cover it. They didn’t. We scraped and begged our friends and paid rent late.

This month, we again knew we didn’t have enough. This time we paid Bodhi’s apartment and went late, hoping to find the money before the 15th of the month. We failed. Bodhi possibly faces eviction from his apartment in three days. Even if my equally broke friends can come to our rescue again, what about next month? And the month after that? And the month after that?

For the first time in the sixth months since we got the two apartments, I am losing hope. People kept asking me how we were going to keep it up. They were right. We can’t.

So now the gun is back pointing at my children again. Make a choice, I am being told.

I can send Jani to Deveroux in Florida, which will take her safety off my hands and allow me to work again. I don’t have a job right now but surely I could get one again, even if it wasn’t teaching. I have to face that my teaching career is a smoldering wreck. I blew it, all because I had to protect my children.

But I don’t trust Deveroux, the only facility to offer residential. I don’t trust them at all. I don’t trust them to give my daughter moments of happiness that make her life worthwhile. I don’t even trust them to keep her alive.

The next choice is to move to Susan’s parents or to my father. In neither place is there space for us, but the bigger issue is that we would be taking Jani away from her health providers, specifically UCLA and her private psychiatrist. We would be taking her away from the school district, with whom we fought long and hard to get what Jani needed but as also shown a willingness to do what it takes for her.

Not to mention that Jani refuses to move, is in fact terrified of moving, and that moving would almost certainly trigger another psychotic break.

The next choice is to send Susan and Bodhi north to her parents and keep the one apartment with Jani. But the consequences of that are that Bodhi is robbed of his father and Jani is robbed of her mother.

In each of the three choices above, we lose. Everyboyd loses. I lose, Susan loses, Bodhi loses (his sister), and most importantly, Jani loses.

So what am I going to do?

I don’t know.

I will not choose any of those choices, which then leads us to yet another risk. Homelessness? Not likely. Having to live in one apartment again and risking the relationship that Bodhi has with his sister and risking Jani’s stability by putting her back into a situation she can’t deal with? Possibly.

Right now, Susan and I are just standing on this train platform, holding our children and staring down the gun pointed at us. The world (the Nazi) keeps wanting me to make a choice. And I am stalling, waiting for a miracle.