January First (Notes from Calalini)

Jani’s Journey website still down

Sat, 6 Feb 2010 02:20:21 -0800

My invaluable tech support and I are making progress in getting www.janisjourney.org back up. I realize it has been down for two weeks, but we hope to have it back up and running soon. Thank you for your patience.

Let’s Talk (Trying to Reach You)

Fri, 22 Jan 2010 23:11:31 -0800

If you are familiar with the Blue Oyster Cult’s 1976 song “(Don’t Fear) The Reaper,” you may recall a repeated line in the second chorus:

Forty thousand men and women everyday (we can be like they are)

Forty thousand men and women, what, exactly? What do forty thousand men and women do everyday?

Die.

Despite Donald “Buck Dharma” Roeser’s protestations that the song is about love, not death, forty thousand people was, in 1976, the year the song was written, the number of people who died in the world everyday. Of course, this was an estimate, based on global population in 1976 divided by average human life expectancy.

Today, despite advances in medical science, better health awareness, and a higher quality of life, the estimated daily death toll on planet Earth is approximately 156,000 people (because since 1976 the global population has increased by nearly two billion), or approximately 1.78 people every second.

Every day that you live, approximately 156,000 leave the earth. Every second of your life, almost two people die, somewhere on the planet.

The number seems staggering because it is also so anonymous. At least one person dies somewhere in the world every second, and except for a select few, you will never know that they existed.

Probably a large number also die alone. Tonight I read about a six week old baby that died on a United Express flight from Detroit to Denver, ten minutes after take-off. The infant had a congenital heart defect that doctors had attempted to surgically repair. Apparently, the relatively minor pressure change as the aircraft climbed (commercial aircraft are pressurized to resemble air pressure at ten thousand feet) limited the baby’s heart’s ability to pump oxygen through the blood and the child died.

Sad.

I have read comments that the parents should have driven home to Fargo, North Dakota (their final destination), although driving through the Upper Midwest in the middle of winter with a very sick child was probably not a great option either.

That’s yet another example of why I hate winter. It kills. Even when it doesn’t kill, it makes life difficult. One way or another, the mindless season keeps trying to destroy life.

That is why I prefer January to December. It may be the worst part of the winter, but at least in January you are closer to the end than you were in December.

That is what I am trying to tell myself now: we are closer to the end than the beginning.

52 days and counting. In 52 days, on March 14th at 2am, the United States reverts to daylight savings time.

We have 52 days left until the night recedes.

It is a long night, though, and it is getting darker.

We are in pure survival mode at the moment, just trying to make it from one day to the next, but it is getting harder.

That is why I keep trying to tell myself we are closer to the end than the beginning.

Right now it feels like everything is failing. It isn’t, of course. It just feels that way because our emotional reserves are running so low.

Jani is struggling and there is no easy way to fix it. We have been here before and come out of it, which is the only reason I know that her struggle, and ours, will ease. This is the third winter we have actively battled her illness. Jani’s psychosis is always worse in the winter.

The problem with psychosis is that if you have never experienced it personally, you have no frame of reference, and I don’t just mean the people who have never been around (or been aware that they have been around) somebody with psychosis. I mean all of us who don’t suffer from chronic psychosis. We have no frame of reference for what it must be like. Those of us who live with and love somebody who has psychosis do our best to understand, but since we humans don’t have a hive mind or telepathic abilities, we can’t know what it is like to be inside the head of someone who is psychotic.

Maybe it is like taking LSD. I don’t know as I have never taken hallucinogenic drugs. The closest frame of reference I can apply is that it is perhaps like dreaming: experiences and actions that would not make sense to us during waking periods make perfect sense in the disjointed and non-linear reality of the dream while we are in it.

Of course, the problem for those of us trying to advocate for a loved one suffering from psychosis is how do you explain it to other “neuro-typical” people when you really don’t understand it yourself. It is like being blind and trying to describe what a sunrise looks like to somebody else who is also blind.

It is impossible.

Yet we have to try, because the neuro-typical people around our loved ones with psychosis can have adverse effects on our mentally ill loved ones. The world belongs to the neuro-typical but we have to try make that world understanding enough so that our loved ones can achieve at least minimal functioning and, even more important, happiness. As I have said before, we can’t fix Jani’s schizophrenia so the only alternative then is to try and get the world to adapt to her. Because neuro-typical people without thought disorders can adapt better to change than someone with psychosis, the onus is on the neuro-typical to adapt, not the other way around.

Treating mental illness is a two-pronged approach. The role of psychiatry is to increase the individual’s chances of functioning within a world that simply doesn’t get what psychosis means. Yes, the role of the medications is to “adapt” the individual. The role of the advocate is then to try and teach the rest of the world what it means to have a mental illness, thereby equally “adapting” the environment the mentally ill individual has to live within.

The psychiatrists have the easier job.

The advocates, and every parent or loved one of a mentally ill person is an advocate in some way, have a job that is, as I pointed out earlier, pretty much impossible because how do we explain something most people have no frame of reference to comprehend.

Being an advocate for Jani’s needs is exhausting. Part of the reasoning behind my perpetual goal of connecting families of mentally ill children together is to share this burden.

And it is a burden. It can kill as much as the mental illness itself. It destroys relationships, marriages, friendship, and families.

It is a burden because Susan and I and every other parent of a mentally ill child are trying to explain something to the rest of you in a language you don’t speak. We might as well be from another planet. Because essentially we are. We don’t live on your planet. On our planet, there is no freedom. There is no escape. We can’t get babysitters. We can’t trust our kids’ lives to others. We can’t have a night out as a couple. We can’t go hang out with friends. We can’t go to events like Bat Mitzvahs or Confirmations or weddings. Our lives are never our own, even for a second.

And so if you are going to help us with our children, you are going to have to land on our planet. You are going to have to learn the language.

Parents of mentally ill children like ours do one of two things in the face of society’s lack of understanding: either they retreat and try to hide it or they talk.

And talk. And talk. And talk. And talk. And talk. We say the same things over and over again to the same people in our lives and they claim to understand but they can’t. It isn’t their fault. They can’t possibly understand because there are some things in life you can’t understand until you have experienced: love, sex, being a parent, combat, drug addiction to name a few.

People want to help us. They really do. That is the benefit of media exposure. Jani’s illness has been recognized by the LA Times and the Oprah Winfrey Show, so we get offers of help that never come to families who haven’t been “discovered,” for lack of a better word. The media exposure has led to, for the most part, collective social acceptance Jani does indeed have a disease, and by extension, has given blessing the idea that early onset schizophrenia exists. And what I am really proud of, and the reason we have and continue to do media, is the fact that Jani’s story has woken society up to the fact that there are other kids like her living amongst the rest of you, parents laboring in silence. You’ve seen Jani. That’s one. You’ve also seen Becca on the Oprah Show. That’s two. You’ve seen Brenna and Ailish on LA’s Fox 11 News and that travesty of a Doctor Phil episode. That’s three and four. If there are four, there must be more, right?

For whatever reason (perhaps because we had to split our family into two apartments to actually keep Jani with us while keeping Bodhi safe), Jani has put child onset schizophrenia on the map. She has given us the opportunity to catapult child onset schizophrenia and childhood mental illness onto the national stage. She has given us a platform where we can talk over and over again, continually hammering home that severe childhood mental illness exists and that these children and their families fall through the cracks of our society, forced to struggle alone and in silence, and, if you can’t tell by now, we are not about to let it go, not until we get what we want which is an environment where severely mentally ill children and their families can get the support, the help, they need.

So I am going to keep talking and talking and talking and talking. So will Susan. We are never going to shut up, not until the day finally comes where you understand the language we speak.

But there are plenty of times when I want to quit. This is no criticism against the rest of society. You don’t live on planet schizophrenia. You have no frame of reference. For you to understand will take a massive amount of patience and effort on both our parts. I have to keep talking and you have to keep trying to understand, even if you never do. Because you never know when either one of us is going to break through. But then one or the other of us will lose the understanding again. We will lose patience. We will have to restart.

In a sense, trying to communicate what psychosis is like is perhaps not all that different from psychosis itself.

One of the hardest things for people to understand about Jani is how her psychosis functions. I will give you an example.

As I have mentioned before in my blog, last fall, after the first LA Times article on Jani ran, we got an offer from a professor of psychology at Glendale College to have her best psychology student interns help us with Jani.

In September, we started with the first set of interns, of which there were five. Some were really great. One in particular found a little bit of Jani in herself and has become both the guide for subsequent interns and our close friend. She is one of the handful of people we trust Jani to completely.

But in September, we had just been through the gauntlet of the height of Jani’s psychosis (so far) with four hospitalizations by that point in 2009 alone, the longest being four months running from February to June. We had gone through the experience of watching Jani crying and saying that she loved Bodhi but she had to eat him, of watching her chew on furniture until her mouth bled because she said it made her teeth feel better, of having the police called on her by her school, of seeing her stop in the middle of having fun and abruptly hit herself in the side of the head as hard as she could and then look at me without any comprehension of what she had done, of having her come back with Haldol and Thorazine but then go into dystonia while unfortunately sane enough to experience the terror of that, of the night that she didn’t know who I was, of Susan and I believing that we were losing our daughter forever and there was nothing we could do to stop it. It was only in late summer that we finally started to feel like maybe this was survivable, both for Jani and for us. By September we had done so much just to stay functioning and keep our family together despite all efforts to send Jani away that we didn’t react the way you might expect when help finally arrived. We didn’t say “Thank God” and take our hands off the steering wheel. We kept driving and the interns were just along for the ride. We had had to keep Jani and the rest of our family going alone for so long that we had stopped believing help would ever come. And so when it did, we no longer had the ability to let go and trust someone else to take care of Jani. Additionally, the original set of interns had read my old blogs about Jani’s extreme violence and were naturally nervous about taking an active role with Jani. I remember one intern, who wasn’t able to attend the first meeting with Jani but who called me on the phone to introduce himself, said to me as I was explaining how he should respond to Jani’s psychosis, “But you’re gonna be there, too, right?”

So it wasn’t a matter of handing Jani over and Susan and I heading out on a date. The end result is that many of the first set of interns really served more as observers than as active participants in Jani’s therapy.

Frustrated by the quiet nature and reluctance of some interns to actively engage with Jani (the whole point of the internship), Susan, myself, and the psychology professor elected to have her select more “extroverted” students the second time around who it was hoped would be more comfortable jumping into Jani’s world (because in order to work with Jani you have to be comfortable interacting with her hallucinations). The second group of interns were selected right before Jani’s winter break from her one hour of school a day, with the idea that their daily interaction would prevent the onset of psychosis due to the loss of structure over the winter break.

It worked partially. Unfortunately, extroversion in some students came at the expense of maturity. But it was also true that the nature of what we needed from the internship had changed. Part of this was because the work of the really great intern from fall raised our expectations of what we wanted. Part of it was also because with winter coming and knowing how Jani always struggles in the winter, we needed the interns to put more effort in. We needed to marshal as many troops as possible if we were going to get Jani through the winter.

With the second group, twelve interns attended that first meeting in Glendale with us and Jani. Today, only five remain. The rest dropped like flies and, I am sorry to say, Susan and I were the ones who dropped them.

When you meet somebody for the first time, their behavior during that first meeting creates in you certain expectations of how that person will act in the future. The first meeting becomes the “template” for all future behavior. This how we determine, at least in Western Cultures, who our appropriate mate is. This is also why so many romantic relationships and marriages ultimately fail: as the relationship progresses, the two people in the relationship are progressively exposed to environmental stressors that didn’t exist when you first got together. Those stressors in turn cause previously inactive aspects of your mate’s personality to appear and suddenly you realize you didn’t know this person as well as you thought you did and you, if you can’t accept these newly active personality aspects, break up.

However, in neuro-typical individuals, barring the introduction of external stressors, they will generally maintain the same personality.

Individuals suffering from psychosis, however, do not have a standard “template” of behavior. When you meet an individual who suffers from a psychotic illness, how they act at that first meeting provides absolutely ZERO indications of future behavior, because although psychosis can be exacerbated by external factors, its manifestation is primarily internal. You can’t really predict when it will appear.

This means that if you are going to work with an individual who suffers from psychosis, you have to go into that relationship with zero expectations of how they will react to you, because they can love you at 10:30 and hate you 10:35 and then love you at 10:40 and as far as you can tell nothing has changed other than something inside the person’s mind.

In Jani’s case, when the second set of interns met her at a local park, she was relatively (for her) stable. Yes, she seemed a bit eccentric, introducing them to her pet “Five” and talking about her number hallucinations, but she didn’t seem particularly “disturbed,” for lack of a better word. She wasn’t violent. She was “re-directable,” as we say in psychiatric parlance, meaning that she was responsive to requests and directions from flesh and blood people. On that first day, it must have seemed for many of the new interns that this internship wouldn’t really be that hard, really just a matter of playing with a cute little girl who talked about weird things. It didn’t occur to them, because they had no frame of reference, that Jani’s behavior that day was a bit unusual for a seven year old. I too can forget how different Jani is until I meet other seven year old girls. Jani’s behavior came across like fanciful imagination, although imagination more consistent with a four year old than a child who has been in school for three years yet hasn’t begun the process of adapting to social mores.

Spending thirty minutes with Jani at a park in the middle of the day will not prepare you for what happens when Jani’s thought disorder kicks in. Hallucinations are often terrifying for children, but Jani is very comfortable with them, probably because she’s had them all her life. As a result, the hallucinations in Jani often seem deceptively innocent. And if Jani’s only symptoms were these rather benign and playful hallucinations, then that wouldn’t be too bad.

But you see, it isn’t really the hallucinations that are the problem, beyond the fact that they can, as now, make it almost impossible for her to focus on anything for more than a few minutes or even seconds at a time. That is hard because during these periods when the hallucinations have almost her complete attention, it is very hard for her find enjoyment in anything. A few days ago, I took her to the local animal shelter. She had been asking to go all day and looking forward to it. But within ten minutes of arrival, she wanted to go. This is unusual for her and it meant that the animals were not enough to keep the hallucinations at bay. During periods like this when the medications seem to be having little impact on the hallucinations, it is virtually impossible to make Jani happy. Things she normally enjoys she loses interest in. Getting her to laugh is a titanic struggle and a total crapshoot. She bounces from activity to activity, desperately looking for something that she will enjoy.

That’s sad, but not deadly.

Hallucinations of the kind that Jani has, that are by and large not frightening, only become dangerous when paired with disordered thinking.

Hallucinations are difficult to deal with but easier for medication to control. It is the second primary component of schizophrenia, the thought disorder, that is much more difficult to treat (and as yet no medication is terribly effective against it). It is also the part of schizophrenia that neophytes to the illness forget about, because they have absolutely no frame of reference for.
The hallucinations may show her numbers and little girls jumping off the roof. They may show her numbers eating other numbers or getting run over by cars. But it is the thought disorder that prevents her from understanding that if she does the same thing she will die.

It is the thought disorder that compels her to hit Bodhi because he spilled a glass of water.

It is the thought disorder that compels her to hit and kick when she has to wait for a few minutes (because in her mind she literally believes the wait will be forever). Every day when I arrive at Jani’s school to pick her up after her hour, I always see her one-to-one and teacher turn to her and say “See, I told you your daddy was coming back for you.” Because she literally believes, if I am one minute late, that I am never coming back, even though I have never failed to appear.

It is the thought disorder that is the true torture for her, that prevents her from accepting even the slightest change in her environment, from accepting the truth of what people try to tell her.

Some interns were cut because once the unpredictability of Jani’s disordered thinking appeared, they couldn’t tell with it. One intern got annoyed when I was unable to make it out to meet her because Jani began screaming at Bodhi when he cried. She began to threaten Bodhi and so I had to pull off the freeway and get him out of the car in the freezing wind so Jani wouldn’t hurt him in desperation to stop his crying. Another couldn’t understand when a few days later, Jani met another seven year old girl who just laughed it off when Jani said “I hate you!” as she always says to every child at first. This child was not put off by Jani’s behavior and they ended up playing together for several hours. I chose to continue letting Jani have the rare experience of playing with a real child rather than pull her away to meet the intern.

The interns who expected that this was a regular, unchanging gig like other internships and could not deal with our need to adapt to whatever mental place Jani was at were eliminated.

Others seemed to be happy to chat away about their beliefs on psychology but then became completely lost when Jani actually began to demonstrate violence or disordered thinking. The most recent intern to be cut started complaining that Jani wouldn’t stay in her (Jani’s apartment) while Susan was with Bodhi in his apartment (I was teaching that night) and then, when Jani started hitting her and kicking her due to lack of action, asked her “Why are you doing that?!” and telling her to “Stop that!” The first question is pointless because Jani’s violence has no logical cause and the second command to stop only makes it worse. You have to distract Jani from her disordered thinking, not try to get her to think about what she is doing.

Susan and I are frustrated because no matter how many times we tried to explain Jani’s illness and how she acts to some of the interns, they just couldn’t get it.

It reached the point where both of us were just so tired from constantly having to explain what was going on that we temporarily stopped the interns from coming. An intern was supposed to come today, but I told her no, not because she is a bad intern but because educating the interns has become so much work that I don’t have the energy left to do when Susan and I still have to keep Jani going.

Right now, ironically since I just wrote this long blog, I am tired of talking. I am tired of talking in a language that almost nobody else speaks.

And so it is so tempting to go back to just going it alone, just me and Susan, because the effort of trying to explain Jani’s illness is just as hard as actually dealing with the illness.

By the way, out of the 156,000 people who die everyday, approximately 3,200 of them die from neuropsychiatric diseases like schizophrenia.

If we stop talking, if we give up, then those 3,200 die in silence and in vain.

52 days until the long night of winter ends. I have to hang on until then.

A Million Fireflies

Tue, 19 Jan 2010 23:09:43 -0800

This past Sunday the 17th, Congregation Beth Shalom in Santa Clarita hosted “Jani’s Giant Garage Sale,” organized by Marla Rosenthal & Karen Cohen. Until this past Saturday, neither Susan nor I had ever met Marla or Karen. These two women simply read Shari Roan’s original LA Times story on Jani back in June of 2009 and decided that they had to do something. So they spent four months of their own time and energy to set up this sale to help us pay the rent in the two apartments we must maintain. Karen lives in the San Fernando Valley and Marla is from San Diego but shuttled back and forth over the past few months, expending an incredible amount of energy for a cancer survivor, to make this happen.

On the Saturday before, we drove up as a family to the site of the garage sale to finally meet Marla and Karen. As we drove, I noticed for the first time signs posted all over Santa Clarita saying “Jani’s Giant Garage Sale” with an arrow underneath pointing the way, or flyers like the one I posted on my blog two entries ago. Jani’s name was all over town.

Our town.

Jani’s story has gone all over the world. In fact, one of the things on my “to do” list is to answer questions for a high school student writing an article on Jani for his school newspaper… in Malaysia. I’ve had a college buddy write to me that he saw Jani’s face on newspapers in Tokyo. Somebody in India wrote to me saying Jani was the reincarnation of the Hindu God Ganesh (the one with the elephant head) because in Hindu mythology Ganesh fought the rats. I have had psychologists in the Netherlands write to me, offering to help.

But to tell you the truth we had started to feel very isolated in Valencia (one of the four cities that were merged in 1987 to form Santa Clarita, the others being Newhall, Saugus, and Canyon Country). Part of this stemmed from the fact that when you have small children, your point of entry into the community is through your local elementary school, in our case Oak Hills, part of the Newhall School District, which sits in one of the more affluent areas of Valencia known as Westridge. Living in an apartment (still one apartment at that time) rather than having a house made it difficult to establish roots in the community. Sure, there were families and kids in our apartment complex, but when we arrived here in 2005, during the height of the housing boom, most of those families were just marking time until their houses in Westridge or Stevenson Ranch were built. There was a lot of turnover.

In 2005 we were still looking to get Jani into a “gifted school,” believing then that her social withdrawal was due to lack of intellectual peers. This was reinforced both by her preference of adults over kids and by the fact that she could do things like identify “W” as the atomic symbol for Tungsten on the periodic table at three years old. We took her rejection of kids her own age and preference for adults as precociousness brought on by her high IQ. Only years later would I understand that the real reason she preferred adults over kids is because when she would describe the world of her imaginary friends and their actions, adults would jovially play along with what they thought was her “great imagination.” Adults would buy into her world because they, and we, assumed then it was harmless. When Jani held out an empty hand to show off Wednesday the Rat, adults would play along. Kids, on the other hand, would grow confused and look from Jani to their mother or father and then back again, clearly looking for guidance on how to proceed. It is not that kids didn’t try to play with Jani. They still do today. But unless they can embrace Jani’s world without question, Jani will simply go away to play with what we now know to be her hallucinations. It slowly became clear that she was testing every child she met, testing them to see if she had found a friend who would travel with her through the world of her hallucinations, and most of the time, despite their best efforts, they simply weren’t up to the challenge. But they did try. Perhaps because she was cute or because she interested them, the other kids tried. They tried to go into Jani’s world, but it was like feeling your way through a dark room you’ve never been in before. Jani could navigate it. The other kids couldn’t. And Jani resisted their attempts to get her to join in their games. Even today, when Jani and I are playing in a public place, little girls will come up to her asking if they can play with us. Jani has never done that. She has never asked to join in anything.

When Jani started at Oak Hills, the first thing we asked her when we picked her up was “Did you play with anyone today?” At first, she would either say “no” or “yes.” Thrilled, we would ask her who?

“Eighty.”

“Oh.” I can imagine that the disappointment in our voices was palpable to her. Even to this day, we still ask her the question and still get excited when she tells us she did play with someone and still get crushed when we find out it was only one of her hallucinations.

But in early 2008, occasionally it would be a real child. Jani actually did seem to be developing friends. Not many, but one or two and we did everything in our power to encourage the bond, hoping, knowing that what made school worthwhile for us as kids, what makes it worthwhile for everyone, is friends, even if it is only one good one.

We worked hard to encourage her and led by example, going to school events, meeting parents, setting up playdates. In the summer of 2008, we were invited to a pool party/barbecue put on by the more outgoing parents from Jani’s kindergarten. I remember playing flag football with some other parents.

It was the last time I felt like we, the Schofields, were part of a community.

And then Jani started slipping away again.

At that time, Jani still wanted to see her friends, but she could not adapt to participating in a group of girls. She would ask about one particular friend, eager to see her, but if there was another girl present as well, Jani withdrew. Even by first grade, cliques were forming. Jani could have held her own in any clique. It was not like the other girls didn’t accept her or called her “weird” or anything like that. Jani simply would not accept the group. She didn’t get angry or jealous like girls can do when a third girl enters a “BFF” dynamic. She just went away to do her own thing, returning to her imaginary friends.

Only now do I realize what was probably happening. Jani needed, and still needs today, the one-on-one attention. She needs the attention of the other girl focused completely on her because that is the only way to drown out the hallucinations. In a group setting, she can’t focus and so returns to her hallucinations. Jani will never be a hanger-on. She can’t just blend in with the crowd and go along with whatever they are doing. She needs the one-on-one because when there is only one girl she can bring that girl into her world and the presence of a real flesh and blood child engaged in Jani’s world dilutes the power of the hallucinations. But it is too hard to get three, four, five, or six girls to play what Jani wants, which is with her hallucinations. One girl can make Jani’s hallucinations into imagination and can bring her back to our world. More than one girl, a group, and Jani can’t focus.

Did you sit for the SATs or ACT in high school? Do you remember taking your driving test when you were sixteen? Do you remember what that was like? Do you remember what it felt like, sitting in that uncomfortable wooden chair, waiting during the proxy’s pregnant pause that they always seem to give before they say “Begin,” then opening the SAT booklet, trying to focus on the first question, trying to ignore the ticking of the clock and the nervous coughs around the room? Do you remember what it felt like when the driving evaluator from the DMV first told you to begin and you put your foot down on the gas pedal, a little too hard at first, then panicking and overcompensating by touching the break, jerking the car, driving more carefully than you ever have in your life or ever will again, knowing damn well that even though the evaluator had his eyes on his clipboard, he was watching you out of the corner of his eye?

At sixteen or seventeen, you think that the outcome of these tests will influence the rest of your life. You are terrified, and must fight your muscles and brain freezing up just to function.

Those are moments of “hyperfocus,” two of the handful of experiences in your life where you are trying to control your environment to the extreme. Those four hours with the SAT or that fifteen minute driving test become the most acutely stressful experiences of your young life. Time speeds up. Things are happening too fast. You know you are making mistakes and you want to be able to do it again, to fix it, but time is against you. Every nerve in your body is alive. Every synapse in your brain is raging. Your blood vessels constrict. Your breathing becomes shallow. Once the instructor/proxy has said “Begin,” there is no going back. Your mind races. You try to focus, try to shut out everything because your life (so you think) depends on the outcome of this test.

When it is done, you are physically and mentally exhausted because you have placed your mind and body under severe and acute stress.

Remember what those four hours or those fifteen minutes felt like.

Now understand that that is what Jani experiences every waking moment.

Every moment of her life is on the edge of panic. Every moment is focused on simply trying not to screw up. Even simple things like playing with her brother, petting an animal, or simply waiting two minutes while I send an email requires extreme hyperfocus to keep control of her mind.

It must be excruciating. I don’t know how she survives it.

Today, I was trying to reply to an email from one of Jani’s interns. We had just come in the door, but Jani needed to go out again. She needed more playtime. I tried to put her off. “Give me just a minute, just a second. Almost done. Almost done. Hold on.” I even tried to make her laugh by saying “Hold your horses,” which will sometimes lead her to make a whinnying sound. When Jani laughs, I know she will be alright.

But a minute is nothing to me. It is everything to Jani, who is desperately trying to control her mind that sees numbers getting run over by cars all the time. She leaned into me, saying “Daddy, please, let’s go.” No whining. Just a request. I kept typing, putting her off. She put her arm around my neck. Still I typed. She squeezed. I typed furiously, both trying to finish and trying to get her used to accepting slight delays. “Daddy, I want to go.” Still no anger or frustration. In fact, her voice was filled with love and affection. But she was hitting me now. I think she was trying to pat the side of my head but she was pounding on me. She seemed oblivious to the fact she was hurting me. I gently pointed it out. She softened for a bit, patting gently, then her hands became fists and she seemed completely unaware. I turned to look at her, frustrated that I couldn’t get a moment to do even the simplest task. Jani even follows me into the bathroom. She can’t be alone. I lost my temper, telling her that she had an apartment full of toys! Play with them! She gets toys all the time, the prizes that she earns. She looks forward to them and works hard to earn them, but once they are out of the box and set up, she never plays with them again. She won’t watch TV by herself.

I yelled at her, desperate for just a single moment. Couldn’t she entertain herself just for a moment?!

But I already knew the answer. I knew it because when she had her arm around my neck, quietly saying “Daddy, I want to go,” while pounding on the side of my skull, she was looking up.

At the ceiling. She was focused on whatever she saw up there.

I felt terrible for yelling at her. She can’t help it. She is permanently in that state of desperation that I only felt during the SAT, driving test, and job interviews. She was not trying to get immediate gratification because she is a brat. She cannot play by herself.

Because she is never by herself.

I was angry at myself then, because I cannot keep up with her. Despite the staggering amounts of medications she is on, she is far from drugged out. She still needs to be on the move every second, always onto something new, always trying to distract herself from the hallucinations that never get tired like Susan and I do.

Only when she sleeps is she ever free.

She apparently does not dream.

Only then is she at peace. And only then can we be at piece.

So I dragged myself out again. We went to Toys ‘R Us and played, Jani moving from toy to toy every few seconds. Nothing could hold her.

Jani cannot stop. I wish the drugs would sedate her, because at least that would give her more peace. But if they don’t. They sedate her body a bit, but not her mind.

People occasionally ask me why we don’t move out of California. First, it is expensive. Second, if our refusal of residential care for Jani was based on the fact that she would be placed in Texas or Florida, why not move there?

The answer is because no matter where Jani goes, her mind will still be there with her, and with it the hallucinations that dominate her world. Will residential care work every second of every day to distract her from them? Or will they just send her to her room and leave her to her own devices, of which she has none?

Will she get better in a residential facility? I know Susan, Bodhi, and I will, but will Jani?

When we arrived at Jani’s Giant Garage Sale on Sunday morning, I was stunned to see how many people were there. Jani was largely oblivious, off in her own world, with two interns trying to keep up with her. Still, people kept coming. And they wanted to meet her. The townspeople of Santa Clarita wanted to meet her. And it was clear, very clear from their eyes and their smiles, that it wasn’t because they wanted to see the freak. They wanted to let her, and us, know that they were there for us. They wanted to let Jani know that there are real human beings knocking on the door of Calalini, ready to come in.

They accepted her.

And for the first time, I knew we were home. I knew that no matter what, Jani could grow up here in Santa Clarita and the town, the people, would accept her. They would protect her. They would understand her. They accepted her as one of their own.

That meant more to me than the money raised.

Santa Clarita wants Jani. They are proud of her.

No, we are not going to leave Santa Clarita, as expensive as it is.

This is home.

Let It Be (Wish I Could)

Sat, 16 Jan 2010 23:06:11 -0800

Yesterday I returned to California State University Northridge for the first time since May 2009. In December, I had learned that my health insurance would terminate this month because I have stopped receiving a paycheck. My own sick leave, which I used while I was on Family Medical Leave this past fall to care for Jani, ran out in October. After that I was able to benefit from the CSU’s catastrophic leave donation program, which allows faculty and staff to donate their vacation time to me so I could continue to get paid. However, that ran out in December. When I found this out, I contacted my department chair, desperate for classes for spring, despite having no idea how I would be able to leave Jani with Susan and Bodhi long enough to go in to teach.

I got one class, which is three units. I need six units to keep my benefits so I am going to lose them anyway. Actually, I won’t lose them as long as I pay $1800 a month (what CSUN pays for my Blue Shield family coverage). My monthly paycheck for teaching one class, which I will start getting in March, amounts to one third of what I will have to pay back to Blue Shield every month just to keep my medical insurance (dental and vision are extra, so I have to let them go). Jani, because of her SSI disability status, gets Medi-Cal, which will ensure her insurance needs are covered, but the rest of us will have nothing so I have no choice but to pay the $1800 a month as soon as I have it to pay. I take 40mg a day of Lexapro, which has no generic equivalent yet. I cannot afford it without insurance covering it and I can not get an individual plan (not that that would be much cheaper) because of pre-existing conditions. Even Bodhi’s asthma counts as a pre-existing condition. The fact that you can’t get individual coverage in America unless you are supernaturally healthy is one of the major flaws of the American health care system. Unless you are under a group plan through an employer, you are screwed.

So I have gone back to CSUN in a vain attempt to try and avoid having to pay the $1800 a month to keep my family’s health benefits. It was strange to set foot on campus again for the first time in eight months. I didn’t know how I would feel.

As it happened, it felt like coming home again after a long time out on the road.

The only reason I was even able to come to campus was because Susan had one of our Glendale College psychology interns with her. That was the only way that she (or I if the situation was reversed) could take both Jani and Bodhi at the same time. Whenever either Susan or myself has to go do something that requires us to be without one of our children, there must be someone sufficiently trained to replace the missing parent for that period, even if it is only for an hour or two. Any extended period that Jani and Bodhi are together puts both of them at risk. Jani seems to have gotten enough of a handle over her violent thoughts that we don’t worry as much about his safety (although we still never leave them alone together). Jani can at least travel in the same car as Bodhi, although always in the front seat while Bodhi is in the back. Two years ago she couldn’t even do that, requiring us to take two cars everywhere. But psychosis is as unpredictable as the weather. Violence caused by psychosis is difficult to see coming because it isn’t driven by emotions. It is driven by a reoccurring thought, a compulsion that can only be relieved by carrying out a certain action. This is why when Jani hits, she typically hits only once. Doing it once frees her from the thought in her head. For most of us, violence comes from emotion. You can see it building like a giant thunderhead of cumulo-nimbus rising over the desert road in front of you. You can feel the winds change direction. You can sense the storm coming and can change direction to avoid it, like an airliner altering course. But psychosis is driven by thoughts, and thoughts shoot in and out of our heads all day. Most of them we dismiss. But those who suffer from psychosis cannot dismiss their thoughts. Once a thought begins, it will repeat until another thought replaces it. It is kind of like an old 33 speed record getting stuck in a groove. It will stay in that groove, playing the same note over and over again until you pick up the needle and move it yourself.

That is our job, my job. Jani is a record. She plays beautiful music. But every so often her needle (her brain) gets stuck on a particular groove and we must be ready to pick up the needle and move it so Jani can keep playing her beautiful song.

In practical terms, this means replacing the looping thought with a new thought, which takes effort. Unlike emotional “storms,” the storm of psychosis will come over Jani without warning. It will just suddenly be upon her. All we can do then is try to distract her, try desperately to replace the looping, destructive thought, with a better one, a happy one. When it happens, I run through the gamut of everything I can think of to get her to think of something else, something pleasant, usually something funny. I must work to get her psychosis to accept the situations in our world that I cannot change.

I don’t bargain with Jani. I bargain with her illness.

It is exhausting.

I enjoy silence. I always have. I have always found refuge in it. When I used to fly, I loved flying red-eyes. I loved the silence of the cabin, which allowed me to hear the dull roar of the engines.

With Jani, there is no silence. There can be no silence. From the moment she wakes up until the moment she falls asleep, she is talking. She talks constantly.

And I must respond.

A lot of kids talk a blue streak. That in and of itself is not unusual. But those kids will talk regardless of whether you respond. You can tune them out to think about the errands you have to run, occasionally coming back with an “Oh, really?” what we call “backchanneling” in linguistics.

With Jani, I have to respond, as does anyone else who is with her. Because Jani’s talking is not just her verbalizing her thoughts. She depends on conversation in way most kids (or adults) never do. Her talking is edged with a desperation beyond “pay attention to me!” particularly because Jani hates talking about herself. She wants to talk about things she finds funny, animals she has met, or her hallucinations and what they are doing. She talks a mile a minute and talks constantly. She does this to drown out the commands from the thoughts in her head. If you have voices in your head, I suppose talking over them would be the only way to shut them out. It explains why Jani loved crowds as an infant. The white noise must have been very comforting, allowing her to actually have her mind back.

Despite her anti-social tendencies with other kids, she is desperate to talk and so anyone around her must talk. And not just about anything. There was a time when I could keep her engaged by talking about something that I was trying to teach her. I could teach her obscure facts and that made her happy. Now that doesn’t work anymore. If I try to talk about something unrelated to the actions of her hallucinations, she will say “No, daddy, please! “ She will then return to telling me what the “5s” or “80” are doing. If I ignore her pleas and keep talking about what I want to talk about, what I hope will distract her from 5 and 80, she falls silent.

And silence for Jani is deadly. Silence leaves her no defense against the thoughts she can’t control.

So I have to respond. I have to feign interest in the actions of her hallucinations. This is how Jani reaches out to the world and so I have to respond in the only way she will let me engage her, by talking about the very things that hold her hostage.

It is exhausting, not only to have to constantly respond to everything Jani says, but to have to constantly listen precisely to what she is saying. I can’t backchannel her. I have to listen to what she is saying and I have to respond, keeping her talking to me at all costs because as soon as I stop there is no distraction from that looping record in her brain. The only time I can stop is if somebody else replaces me. And sometimes not even then.

I would love to say, “Uh-huh” and “Oh, really?’ but I can’t.

The primary basis of Jani’s therapy, the core of what keeps her out of the hospital and gives her some ability to function in our world, is what I have come to call “writing Jani’s story.” Jani spends her every waking minute describing the actions of her hallucinations. The only time she stops doing this is when she is checking and rechecking and rechecking over and over again what activities we have planned and what order we are going to do them in. Today, for example, after school she was hungry. However, she wanted to go to the animal shelter first, then eat (French fries and cheese sauce at Wendy’s). She asked me what I wanted. I was kind of sick of Wendy’s so I said Taco Bell. She then spent the entire drive to the Castaic Animal shelter, repeating “We’ll go the shelter, then Wendy’s, then we will get you something at Taco Bell.” This laying out of activities seems to comfort her.

After visiting with the dogs, we entered the cat solarium that they have at Castaic Shelter. There were only two cats and neither were in much mood to play. So Jani started a “cat class” with her stuffed cat she brought with her. First, there were “scratching lessons” using a scratching post. That lasted about five seconds. Then it was time to eat. She took her stuffed cat to the food bowl. Another five seconds and she was on to the next activity. I realized she was conducting a hyper-speed version of her kindergarten, still her most successful school experience, where every four to six minutes the class was on to the next activity.

Jani loves the hospital because her day is completely planned down to the minute.

Watching Jani conduct her “cat class,” she never let the poor stuff kitty have more than a few seconds at one activity. Even “sleep time” lasted only a few seconds. I have seen Jani do this before when playing “house,” where the activities are planned rigorously to the minute and extremely fast. This happened at a birthday party recently. Jani broke off the feeding of a pretend animal to say it was bed time. While the other little girl argued it wasn’t bed time yet, Jani went to lay down. Ten seconds later, she was back up again saying it was seven in the more morning now.

In the real world, it is almost impossible to shift gears that fast, particular as we grow older. Adult activities require we spend some length of time. But time, and silence, is Jani’s enemy because she cannot quiet the thoughts in her head. She can only drown them out through endless talking and constantly changing activities.

This is what Susan and I are up against.

“Writing Jani’s story” means that when Jani is telling me what her hallucinations are doing, I take over the story and dictate their actions. For example, tonight Jani was filling up a spray bottle with water. She said it contained “six juice” which she would spray at the Fives. It would hurt the Fives’ eyes and drive them away. When I asked why she wanted to do this, she said because mommy doesn’t like the fives.

I don’t like the hallucinations either but I don’t want her trying to hurt them. One, if she tries to hurt them they will likely hurt her back, like when she pushed 80 and 80 pushed her into a line of shopping carts. Second, I don’t want to reinforce the idea that inflicting pain in the answer to anything, even if the thing she is inflicting pain on doesn’t exist. Violence against her hallucinations often eventually leads to violence against somebody with flesh and blood, and often that target is Bodhi. I want her to understand that just because her hallucinations don’t do what she wants we shouldn’t hurt them. I guess you could say I am trying to reach her empathy through her hallucinations. She has empathy, always has had, but it is sinking under the psychosis. I want to encourage her to be peaceful and loving, whether it is to her hallucinations or to real flesh and blood because, honestly, she can’t always tell the difference. I would rather her be kind to the Fives if it means that she will also be kind to Bodhi and other real human beings.

So “writing her story” tonight meant telling her that if she wants the fives to go away, we need to trap them humanely, not hurt them. I asked her what Fives like to eat. She said apples. So I got a piece of apple and put it in a box. I explained when the five goes in to get the apple, the box will close, trapping the five. Apparently it worked because a few seconds later she came out onto the balcony and opened the box, releasing the five back into the wild.

“Writing her story” means taking what she is saying about her hallucinations and constructing a story around them, the story that we want. Then the hallucinations enter the realm of imagination and become harmless. Jani not only accepts this creation of a story about her hallucinations, she enjoys it. It works better than anything to bring her back into our world.

But it is exhausting.

And it is reason I can’t just leave her with someone else. Unless they are comfortable doing that too.

Because child has schizophrenia, it has turned out to be beneficial to be a storyteller. Maybe that is why schizophrenics in indigenous and traditional cultures are often shamans or seers. Shamans see a story and then take control of it.

But how I wish it didn’t have to be like this. The college psychology intern program was created to give us a break by giving Jani other non-judgmental people who could interact with her hallucinations for a while. The fact is that as good as I am at keeping Jani going, I am not enough, because my body and my mind cannot keep up with her. I have been sick four times already this winter. I am physically breaking. I find it difficult to drag myself out of bed every day, not only to keep Jani going but to do all the other requirements of daily living. Jani’s mind overwhelms and shuts out the needs of her body. Even when her body is exhausted, the hallucinations continue because they have no bodies to run down. Jani doesn’t stop even when her body is ill, which is why we must closely monitor her physical health. She can’t tell when something in wrong with her body. Susan and I and everybody else who works with Jani must function as extensions of Jani’s brain, because almost all of Jani’s thoughts are taken up with the hallucinations. We, those of us outside her, must then serve as the rest of her brain, doing everything from reminding her to wash her hands with soap after going to the bathroom to making sure she sees cars and people in front of her when she is out in public. We have become the rest of her brain and it is exhausting.

So going back to CSUN was like going on vacation. The ironic thing about those who have accused me of milking the system in order to avoid working or exploiting Jani’s story for the same reason is that “working” in the traditional sense is a million times easier than keeping Jani alive and happy. Teaching isn’t working. Hell, breaking rocks in the hot sun isn’t working. Keeping Jani going is working. Everything else allows me to relax. The thing I work the hardest at in life I get no money for. Teaching, by comparison, is like being paid to do nothing.

But going back to CSUN was also a painful reminder of what my life once was. I was free in ways I never knew I was. I was still a father then and still had the normal father responsibilities. But I was not responsible for being an extension of Jani’s brain. I was responsible for her basic needs and for loving her. All parents are responsible for keeping our kids alive in the general sense. But we parents of mentally ill children must be responsible for keeping our kids alive every second they are awake, because they are constantly in danger from the forces in their heads. This is why so many parents ultimately are forced to send their children to residential care. Mental illness cannot be defeated because it has no body to get tired. We do.

You don’t often hear me say this, but I would trade it all to go back. The sale of my memoir of Jani’s life (which I still haven’t gotten the advance for yet), “20/20” (airing March 5th), “The Oprah Winfrey Show,” the LA Times. None of that makes up for the fact that every day when I wake up I wake up to Jani’s illness. I think I’ve gotten enough attention now. I would love that miracle cure. I don’t need Jani to be sick anymore, people. It wouldn’t hurt the sale of my book at all. Rupert Isaacson, author of The Horse Boy, about his journey to take his autistic son to the horse shamans of Mongolia, still sold his book. But even better, he got his son back from the jaws of autism. His son came back from the journey emotionally and physically continent, “healed,” although Isaacson is careful not to say that he has been “cured.” He writes that his son is still autistic and draws a distinction between “healed” and “cured” and to his credit does not advocate that everybody with an autistic child should jet off to Mongolia. He doesn’t even make the claim that the shamans healed his son. He is just grateful that healing occurred, whatever brought it on. His book ends with him and his wife actually being able to get babysitters for the first time and go out as a couple.

I wish my book could end that way.

I really hope that you can tell that I was being sarcastic in that previous paragraph. I have never needed Jani to be sick. I don’t want her to be sick. I wish I could believe in the miracle cures that some people still write to me about. I wish I could have that faith that if I took Jani to Mongolia her spirit would be healed. I wish I could believe that if somebody just laid hands on her, she would be whole.

But I can’t. Maybe I can’t risk further pain of disappoint. Maybe I don’t want to torture Jani by putting through that which is not proven to have any effect at all (which is essentially what Isaacson, as much as he clearly loves his son, did-he gave his son reindeer feces for God’s sake!)

Or maybe I just have to accept Jani for who she is and hope for the best.

I cannot chase miracle cures to the ends of the earth, perhaps because I am afraid I will miss Jani in the meantime. Given Jani’s need for structure, I don’t see how she could do it anyway. Isaacson just got lucky. I think he knows that, too.

And I can’t chase the miracle cure and leave the other kids, the other families, I have met behind to suffer. Some of these people we found. Some found us because of Jani’s media attention. I can’t leave them behind. Even if I could believe in miracle cures, no miracle will work for everyone. We all have different brains. No two brains will respond exactly the same way, hence the reason why it is impossible to predict how someone will respond to medication-all medication, not just anti-psychotics. A drug might fail for 10,000 but work for one. It is the same with the so-called “miracle cures.” For every miracle cure that has been suggested to me, for every child it supposedly “worked” for, I can show you ten more for whom it didn’t. I know this because the parents for whom it didn’t work are the ones who write to me, desperate.

Their children are as important to me as my own. I can’t leave them behind because I wouldn’t want them to leave Jani behind.

Either we save them all together or together we all fall.

The Code/Crossing the River

Mon, 11 Jan 2010 23:04:08 -0800

I am not someone who tends to believe in that which cannot be empirically verified. I have always believed in science (because it made sense to me) but I have not always been as resistant to ideas beyond the ability of science to verify as I am now. There was a time when I believed in conspiracy theories. There was a time when those who email me periodically to share their revelation of the “Big Pharma” conspiracy to keep us drugged and complacent would have found me willing to listen. What changed me were two things. One, any good parent concerned for the wellbeing of their child would, I hope, be skeptical of exposing their child to every treatment espoused by anonymous people over the internet. Two, I came to see, particularly because of the struggle to get Jani the care that she needs, that in general the human race, for all of its positive qualities, are simply too driven by personal self-interest to maintain a conspiracy for very long. Eventually, we all turn on our fellow human beings when it serves our interests. It is biological, a relic of when we had to compete with each other for meager resources (and still do in many parts of the world). Our tribal nature often sabotages any collective. It is hard to put the needs of a larger group over the needs of ourselves and our immediate families, for ultimately it is our own survival and that of our progeny that drives our actions.

Ultimately, communism failed because of the inability of individuals to put the need of the collective over their own needs. Communism is, sadly, against our nature, something that Marx did not anticipate.

However, I have consistently found Western (Greek) astrology to be, well, correct. Empirical observation has shown me that time and time again, people do generally fit the characteristics of the “sign” under which they were born. I may not match every quality listed for Capricorns, but I match a lot of them and what I don’t fit with Capricorn fits quite nicely into Gemini, my “moon” sign.

Susan is so good at this that she can guess at the month a person was born after just speaking with them for a few moments. The vast majority of the time she is correct.

How is it then that something that science dismisses as having no scientific basis can be so accurate? How can the beliefs that emerged from a Babylonian cult over five thousand years ago so accurately describe a person’s personality in ways that modern psychology would drool over?

Maybe all these “nutty” ideas that people email with have some element of truth to them, even if science dismisses them.

Or maybe, just maybe, the Babylonians stumbled onto a truth about human personality but simply attributed it to the most dominant forces in their lives, the heavenly bodies.

Maybe, just maybe, what the Babylonians discovered is that you can somewhat predict a person’s personality but would have had no way of knowing that what caused it was not in the night sky above them but contained within something that humanity wouldn’t discover until nearly five thousand years later.

DNA.

I have, on occasion, gotten emails or read comments from people who insist that schizophrenia cannot be hereditary because if that was true, why don’t I have it? Or Susan? Why is that schizophrenic children come from non-schizophrenic parents and why is that schizophrenic parents, or at least those “labeled” that way, more often than not do not produce schizophrenic children?

These questions reflect the lay person’s understanding of genetics that genetic illnesses pass from parent to child in much the same way blonde hair or blue eyes do.

Luckily for these people and all of us, this isn’t how genetics works. If it were, none of us would be here. The human race would have been wiped out long before we even evolved into the human race. We would have been wiped out long before our earliest mammalian ancestors hid under the feet of the dinosaurs. In fact, nearly all life save simple single celled bacterium would not exist. The earth would still be nothing more than rocks and the primordial soup that filled the oceans one billion years ago.

If genetic abnormalities passed from parent to child through the simple process of reproduction, within a handful of generations such abnormalities would have wiped us off the face of the planet. All of us carry enough defective genetic material that our descendents would not survive beyond two or three generations. The seasonal flu or the common cold would have decimated us. Sure, a few resistant individuals would survive but soon there would be insufficient genetic diversity to ensure survival, particularly since in all likelihood the survivors of an epidemic would all come from the same family.

The primary purpose of all life on Earth is to survive by any means necessary. In order to do this, life has had to adapt, and one of the ways it has adapted is to ensure that there is sufficient genetic diversity so that damage to the entire species from the defective DNA sequences of one individual are minimized, often to a single generation. Life does this through the process of genetic “recombination.”

Essentially, when our chromosomes divide during mitosis, the RNA chains that construct DNA chains to match the sequence of proteins on each half don’t exactly construct an exact match. On the surface, the new chromosome looks identical to the original but looks can be deceiving. It is true that long stretches of the giant coils of DNA inside the chromosome are rebuilt as an exact replica of the original, but not all. Small chains are “recombined” or mixed around to produce a chromosome not completely identical to the “parent.” This is why, although you may look similar to one or both of your parents, you don’t look exactly the same. In other words, during the process of fertilization, mom’s chromosomes and dad’s chromosomes swap a few DNA chains, combining into a new sequence. No matter how many kids mom and dad have, no two children will get exactly the same combination of DNA chains (which is why some siblings can be a bone marrow donor match for a sick child and not others, even though they were born from the same parents). In short, we get a lot from our parents but the way your DNA combined during your creation was a unique event. It will never happen again. That is why you are the only you in the universe.

This is how nature ensures sufficient genetic diversity to give us a fighting chance at survival.

And it is probably how schizophrenia has survived in the human race through the eons. Even if both parents had schizophrenia and were functional enough to have sex and raise a child (which those with schizophrenia do every day), there is still only a small chance that the child’s DNA will combine in such a way as to produce schizophrenia again. However, the pieces are still there. Perhaps the combination in the offspring renders the disease inactive, but there is always the chance that over successive generations the DNA will recombine into the proper sequence to activate schizophrenia.

Recent research has also shown that schizophrenia seems to have some correlation with both intelligence and creativity (particularly the latter), both qualities necessary to the survival the species, which might explain why schizophrenia has not been “deselected” from the human genome over the course of our evolution. It is possible that the DNA sequence that activates schizophrenia might sit on a gene responsible for creativity and imagination and the loss of such a gene would be catastrophic. It is our ability to conceive of a future that does not yet exist that allows us to alter our environment sufficient to ensure our continued survival.

I have on occasion been accused of causing Jani’s condition through my own actions. Since these accusations are never reinforced by Jani’s continent of doctors and therapists, this leads to the belief in some of a conspiracy to suppress alternate theories of the origin of schizophrenia. Of course, nobody likes to be blamed for something, particularly something as horrendous as schizophrenia in a child. It would be like being told you were personally responsible for genocide. The enormity of what you were being accused of doing would naturally cause one to deny it.

But not forever.

After all, we are a culture that was “raised” to be parents. We bought the baby books. We went to baby care classes. We fretted over every scrape and bruise. We attempted to inoculate our kids against all the evils of the world, from chickenpox to child molesters. Prior to Baby Boomers becoming parents in the mid to late seventies, “education,” or the quality of it, was not a pressing issue in the minds of Americans when it came time to vote. Recently, Susan and I were discussing our childhoods. Susan is born of “Silent” Generation parents. I, six years younger, was born of Baby Boomer parents. When Susan was a young child in the Seventies, she came home from school and went out to play in the streets of the neighborhood, largely without adult supervision. Her friends were whoever happened to be around. Her parents did not shuttle her to afterschool activities. She was left to her own devices until dinnertime, as were all the neighborhood kids. By the time I was a child in the early Eighties, the concept of the “playdate” had been born. Parents now scheduled every aspect of their child’s life, seeking “enriching” activities and “appropriate” playmates.

The play areas that Jani and Bodhi play in today did not exist even twenty years ago, let alone thirty.

By the time Susan and I were of childrearing age, we were surrounded by a culture that stressed giving your children the best care and education from birth. Where our mothers learned to change diapers from their mothers, we learned from a paid professional in a baby class.

Like most middle class Americans of our generation, we doted on our children even before they were born, playing Baby Mozart while Jani was still in the womb.

A consequence of our “child-centered culture” and our willingness to learn everything we could about how to be better parents, however, has also made us far more introspective about our parenting. Unlike the generations prior to the Baby Boomers, who “had kids” but didn’t “raise children,” we do a lot of self-recrimination. We blame ourselves for “failures” our grandparents or even parents wouldn’t have thought twice about. Unlike the older generations who raised their kids to fit the world, our generation tried to make the world fit our children. And no generation in history has been more willing to consider our own faults than us.

My point is that a rejection of the blame for Jani’s condition wouldn’t last long because we have already been steeped in culture that teaches self-analysis for the purpose of “being a better you!” We had already been unconsciously prepared to take the blame long before Jani was born. We have been raised to put our children first above everything, even if that means admitting we made horrible mistakes. It would not take long for my daughter’s very real suffering to overwhelm the natural resistance to accepting blame. Twelve months ago, when the police were called to Jani’s school because she was trying to throw herself through doors and windows and alternating terrific violence with happy bouts of playing with “Magical 61,” I was, after two years of trying to find someone who could help Jani, prepared to give her up to the State if it meant she would get the care that I obviously could not provide. I was willing to give up my child who I had constructed my entire life around since she was born if it meant that she could be made whole again.

I would do anything for my children, even if it meant walking away. If I could know that Jani would be whole and happy and live a long life in return for me never seeing her again, I would do it in a heartbeat. It would rip me apart. I would have no further reason to live. I don’t actually think I could live with it. But I would do it for her.

So if I believed that I was the cause of Jani’s illness, it would not be hard at all to accept the blame. Hell, it would be easy, much easier than having to do battle with what is inside her head. If I thought I was the one who drove Jani to try and jump out a window or run into traffic, I would remove myself immediately without any regret. If you could convince me that Jani would be made whole by my death, I would gladly submit.

I am not alone in this. Most parents would die for their children.

I have spent years analyzing everything that happened to Jani, trying to discover if there was something I could have done differently to spare her having to get her blood drawn every week because she is on clozapine. I have watched my daughter suffer in ways I could never have imagined. I have watched her chew on furniture until her mouth bled because she said it made her teeth feel better. I have seen her hit herself so hard in the side of her head with a drumstick that she left a welt and then look at me in terrified confusion. I have seen her reject every flesh and blood friend until she was alone with only her hallucinations. I have watched her spend 290 days in the hospital away from us.

Watching her suffer, unable to control herself, is the worst thing I have ever experienced in my life.

If I was to blame for that, I would damn sure accept it. If I could free her, I would.

In the end, I have had to face to far worse conclusion: that there is no one to blame for Jani’s suffering. There is nobody I can punish, not even me.

I cannot strangle the DNA chains that make up her chromosomes.

But if a certain strain of DNA that combined to trigger her schizophrenia is the cause, if the Babylonians were right and our personalities are pre-determined, getting only the cause of that pre-determination wrong, not its effect, then we have to face a disturbing possibility.

That we perhaps have little control over who we are.

This is easier when we are talking about a seven year old girl tortured by a mental illness; not so easy to accept when a serial killer or child murderer uses genetics as an excuse for their crimes.

If so much of who we are is determined by the recombination of our DNA, can we be held responsible for anything?

I hope so. I would hate to think of a world where nobody accepts any responsibility.

Just because your genes make you do something, doesn’t mean you have to accept it.

But it does mean you have to be aware of it.

I am unabashedly a believer in a bio-chemical/genetic cause of schizophrenia.

I do not believe a person’s environment causes schizophrenia, although a person’s environment can make it better by reducing the stress the person suffering from schizophrenia has to face. The environment can help by staying calm and loving in the face of this disease.

I do believe schizophrenia is a disease, just like diabetes. Like all chronic diseases, it must be managed, which caregivers doing their best to increase quality and duration of life.

I believe that medications, although far from perfect, are the best option we have for providing that quality and duration of life for those with schizophrenia. Medication alone will not “cure” schizophrenia or other serious mental illnesses, but it must be the cornerstone and starting point of any therapy. I am pro-medication because it saves lives. I have seen it save lives. Use of medication must never be taken lightly. The side effects must be evaluated in terms of potential improvements. For most psychiatrists, it is. I have yet to meet a psychiatrist who downplays or minimizes the side effects.

Medications, all of them, do indeed have side effects. There are no miracle drugs. I choose to use them with Jani because the threat to her life, both physical and in terms of quality, is greater from the psychosis than it is from her medications. Those who claim otherwise have never met Jani and have never seen what I have seen. Their resistance to medications make them blind to everything I have said about what Jani’s life is like when medications are not working and what her life is like when they are. I will not listen to some moron who claims that the side effects of the medications are far worse than the psychosis. The psychosis is a lot closer to killing her than the meds. I can’t tell you how many emails I have gotten from people that start “I was like Jani, except I didn’t have hallucinations…” That should stop them right there. If you didn’t have hallucinations or thoughts in your head telling you to do things that will hurt you or others, you WERE NOT like Jani, and so your “recommendations” for holistic healing or diet changes do not apply, do they?

I will consider alternate therapies in ADDITION TO medications but once someone advocates them as a replacement for medications, they’re gone. Jani’s survival is too important to me to risk surrounding her with half-wits who suggest she has anything other than a biological disease that requires medication to manage. I cannot risk Jani’s life being put in danger from people who suggest to her that she doesn’t need her meds.

Jani can and is having a life, but the quality and duration of that life depends on her knowing she can never, ever stop taking her medication, whatever that medication should be (and it will likely change over the course of her lifetime). You don’t have to agree, but if you don’t you get nowhere near my daughter.

Some weeks ago, I had written to an animal rescue to ask them about animal therapy for Jani. Tonight, the woman who founded the rescue wrote back. She was willing to help Jani, but she wanted me to take her to an organization that believes that mental illness is a behavioral problem caused by poor parenting as well. They are anti-drug. As much as I admire this woman for her animal rescue work, I must now politely tell her “thanks, but no thanks.”

Mental illnesses like schizophrenia are a biological disease. You would never tell a diabetic to stop taking his or her insulin. Just like insulin keeps diabetics alive, the appropriate medications keep the severely mentally ill alive. If the body cannot make insulin, you must inject it. If the brain’s dopamine receptors are non-functioning, you must replace the chemicals artificially. Why is this so hard to accept?

I believe in medication. That is the starting point. But it is not enough. Families with mentally ill children need support, physical, emotional, and financial to keep their mentally ill children in the family instead of sending them away to residential care. My intent is to found a non-profit organization that will provide this. Susan and I are already educating college psychology interns to provide the physical assistance. I have already set up an online network to provide the emotional assistance. Now I need the money to carry it all out.

I am not asking for money. What I am seeking is someone who shares our goals who knows how to set up a non-profit organization, as well as a person who knows how to write a grant request and where to seek such grants. They don’t have to be the same people. I will take two, three, four, twenty, one hundred.

I want to use these funds to hire someone whose job it is to marshal resources for families with severely mentally ill children. Many of these parents cannot not work because they need to keep their mentally ill children safe. We will provide financial support to them. Many of these parents have children in out of state residential facilities and cannot afford to travel to visit as often as they want. We will pay for that travel and lodging. Many of these parents are in crisis with their children. We will send help. We will find therapists and psychiatrists willing to work, either pro bono or at a reduced rate. We will subsidize the treatment.

Next, I want to the organization to purchase land for an animal shelter. The animals in this shelter, drawn from the public shelters, will provide animal therapy to mentally ill kids. This shelter will become the basis of a day school completely geared to education children with mental illnesses, many who cannot function even within special education. The school will allow mentally ill kids to gather together and have each other, giving them increased support and an environment that does not judge them for what they cannot control.

From the school, we will move on to the creation of duplexes and bungalows that will allow families with mentally ill children to actually live with their children while receiving 24/7 therapeutic support. Basically, I want to extend the two apartment idea that has served Jani and Bodhi so well to other families. I want to give them away to keep everybody in the family safe but still stay together.

I realize all of this will take time, but if you are willing to help me bring this to reality, then I welcome you. Remember, it is not money that I need right now. I need your expertise.

And I need your passion for making the lives of mentally ill children fulfilling and filled with love and understanding.