Often when the phone rings, I don’t answer it. This isn’t because I don’t like you or don’t want to talk to you. It’s because sometimes I just can’t take the risk.

You see, when you call me and I am with Jani, I must divide my attention between her and whatever it is that you are trying to tell me. During the seconds or minutes of the phone call, my brain is engaged with two things that require active thinking: coming up with the answers to your questions while  at the same time monitoring Jani for any sign that the psychosis may take this opportunity to strike.

Having to talk to you means lowering my level of observation and that means that for the time of the phone call, the front lines are vulnerable.

Generally, Jani will keep talking to me while I am on the phone. This is not an act of rudeness on her part. Rather, it is part of the unspoken agreement we maintain. What is so exhausting about being with Jani is that communication is constant. She talks to me constantly (or Susan if she is on duty) and I (or Susan) must constantly answer. It is a conversation that can never lapse unless somebody else is distracting her. So the first thing you need to understand is that Jani talks to us constantly, without break. If she stops communicating with us, even for a second, that is a warning sign and the alarm bells start going off in our heads. So we then must talk to her, question her about something routine or insignificant (never about her psychosis), even something we already know the answer to, because her response means that she is still with us. If she responds and resumes talking constantly, she has re-engaged with our world and we can return to having to “simply” respond to her comments. It doesn’t matter what it is about. Usually it is about her hallucinations and what one rat, cat, or friend is doing, and we listen and respond with questions and comments as if her life depended on it... because it does. We do not tell her they are not real or forbid her from talking about them. We would rather her talk to us and engage with us about things that are not real than not at all.

Living with Jani is about trying to maintain an endless conversation. Think back to the days you’ve had where you’ve had to talk all day, every second. If you haven’t any experience like that, think back to when you took a speech class in college and had to give a speech. For five to twenty minutes, you were trying to both keep your audience from tuning you out and trying to just get through it. Now blow that experience out to everyday, all day, from the moment you wake up until the moment you go to sleep, and you get some sense of our life.

You can’t tune Jani out. You can’t automatically respond with “I see” and “Oh, really?” at least not for very long. Sometimes the sheer constant work forces me to drop out for a minute, but it never lasts long. Within seconds of Jani falling silent or if I hear her start to talk to a rat, I immediately drag myself out of whatever place in my head that I ran to for a minute and re-engage.

Lately, Jani has been asking me to teach her about things again, usually animals. This is a positive sign because it is not something that she does while in psychosis. During her entire stay at UCLA (all three of them) she almost never asked me to teach her anything. Her asking me is not simple curiousity. It means she is trying to stay in our world, and stay with us. She is begging “Please, keep me interested! Make me interested in something real!” When Jani wants to learn it means she feels her illness coming on and is trying to distract herself and she is asking my help to do it.

One of the changes from when she was younger is that I can’t just teach her anything she doesn’t know. I have to teach her what she is interested in, which is usually something tacitly related to one of her delusions. For example, she will ask me “Teach me about cats.” So I may start mining my basic knowledge of the domestic cat, but that knowledge is limited. I cover the basics: mammal, descended from the great cats, etc. But that isn’t enough. I teach what I know and stop, taking a breath. Silence falls over us. That silence is deadly.

She will look away, and then back to me. “Teach me more about cats” or “You were teaching me about cats.”

This means that she has looked and seen her hallucinations waiting for her, and is still trying to ignore them.

So I start talking about the history of cats, or at least what I know of them: first recorded domestication of the cat, Ancient Egypt; likely were domesticated to help eradicate rats and mice that were eating grain stores.

Do I know this for certain? Not really. Some of it comes from fuzzy memories. For years, my friends always told me I was a fountain of useless facts, a walking game of Trivial Pursuit,   and they wondered why I bothered to remember this stuff. I never had an answer beyond “It just interests me.”

Now, trying to raise a schizophrenic child who depends on my encyclopedia of irrelevant facts for survival, I wonder that perhaps these irrelevant facts weren’t so irrelevant after all. Maybe my ability to learn and retain largely useless information was the hand of God at work.

Rats eating the stores of grain makes me think of how for much of human history, rats have lived in extremely close proximity to humans, and how this proximity led to the spread of the Bubonic Plague (spread by fleas on the rats). I know more about the Bubonic Plague than I do about cats, so I try to keep her interest by teaching her about this. At one time, this worked, but not anymore. Jani will listen politely for a few moments, let me fall silent, making me think she is okay, only to ask once again “Teach me more about cats.”

I could make stuff up, but Jani can detect bullshit a mile away. If you are insincere, she will know. It is a skill I have discovered to present in every mentally ill child I have ever met. They know when you are being insincere. Let that be a warning to all of you. If you want them, you have to be present in every way for them.

I can’t just say “Let’s go to the library and learn more about cats” because we don’t have that kind of time. Jani’s hallucinations are wolves at the gate. I don’t have 20 minutes to drive to the library or look up stuff on the internet. I have seconds to keep her engaged in this world. Jani cannot handle “downtime” because it leaves her vulnerable to the hallucinations. This is why having patience is a titanic effort for her. Asking her to wait is like asking her cut her own throat.

So I start teaching her the same things I already taught her about cats. It is about the engagement, not the content of what I say. I repeat what I already told her, saying it in a new way. I see her look away again. I wait a few seconds, then repeat myself again, starting off with “So, I think cats were probably domesticated to catch rats who were eating human food,” making it sound like I am starting off on a new thought, but really I am just saying the same thing, reordering the words, all in a desperate attempt to bring her attention back to me and away from whatever she is seeing.

This happened today on the way to get Jani food at Del Taco. When Jani is hungry is always a very vulnerable time for her. It is a time when she is most at risk from her hallucinations and most likely to listen to whatever they tell her to do.

In my mind, while driving and thinking up things to say to her, I am also silently counting down the time I think I have left before I lose her. Everything is a race against time.

It is, quite literally, having to maintain a conversation that her life, or at least her sanity, depends on.

Today, I was still five minutes away from Del Taco, calculating in my head that she was at least ten minutes away from eating (which would allow me a break from talking), and watching her stare out the window and come back to ask me to teach her more about cats.

Never have been a cat person, I was out of things to say. In a stroke of inspiration, the comment about rats eating human grain stores gave me the idea that maybe the reason rats are nocturnal is because of humans. Since rats depend so much on human food, it is easier to get that food if humans are asleep. If we humans suddenly became nocturnal, I wondered if the rats would switch to being diurnal.

I told Jani this, having no idea if this was really true, but it sounded logical. And it worked. She wanted to learn about rats. She stayed with me. Sometimes when I am out of knowledge, I have to try and create it, verbalizing my thoughts to her as I go. So here I was, driving for burritos and trying to work out the evolutionary relationship between the rat and humanity.

And Jani stayed with me.

It has been said that necessity is the mother of invention. We create knowledge because we have a desperate need to solve a problem.

That is what I am doing when you call me. If I answer, I have  seconds to talk before Jani starts interrupting. Again, this is not out of rudeness. When Jani’s meds are working, she is unfailingly polite. She rarely says please, but she always says thank you when I give her something she has asked for. I think this is because she doesn’t have time to say please. Every request is made out of desperation. Every request is her attempt to stave off her psychosis. And so when it is granted she is sincerely grateful, because we have kept her illness from creating havoc in her mind and interrupting her life.

In fact, Jani will say “Excuse me” over and over again while I am on the phone. I will try to put her off for a few seconds with “Just wait a second, sweetie” but I already know I am on borrowed time. I am borrowing time from Jani’s psychosis to talk to you. If I don’t respond, Jani will start talking, either asking me a question or, more often than not, asking me for reassurance of a fact she already knows, such as where we are going next. So I am trying to hear what you are saying and monitoring Jani for signs of psychosis at the same time, followed by my talking to you and listening to her and responding to both at the same time. If you ask me a question during this, you will find that I am nothing like what I sound like on this blog. I can’t answer your question coherently because it isn’t my priority. Jani is. So on the phone I perpetually sound like I just woke up and have no idea what is going on. If you asked me to sign my life away during these moments, I probably would because I am not really listening to you.

At this point most people who are trying to talk to me on the phone will give up and say “It sounds like you have your hands full. I’ll let you go.” What never ceases to amaze me is how most of these people know Jani’s condition, are aware (at least in principle) of her history, and are cognizant of what Susan and I have done to keep her stable, yet even these people don’t really get it. I don’t blame them. You can’t understand it until you are in it. And I am talking about those who are actually trying to help us. Even these people, as kind-hearted and well-meaning as they are, cannot really understand why a simple phone conversation or simple task like going to the supermarket is beyond us. It is not because they are insensitive. Far from it. Like I said, they are trying to help. No, it is simply because they have no frame of reference. There is a big difference between understanding child onset schizophrenia or other serious mental illness from a intellectual standpoint and understanding it on an emotional level. Everybody has had crises in their lives, but for most of us those crises end. Ours does not. It will not. And so when people try to understand, they do so within the only framework that they have, which is whatever crisis or crises they have had to deal with. The difference is those crises came to an end.

You can’t understand this until you have been in it. This works both ways. I can’t understand, really understand, what it is like to watch a child die from a physical illness like cancer, because I haven’t been it. I don’t claim to know more about the world because my child is mentally ill. I don’t know more than you, in general. I just know more about this. I am not any wiser in general. I am just wiser about my child. You cannot understand what I experience, not because there is anything wrong with you, but simply because unless you have lived it (like many of readers) you can’t possibly know.

Just like I can’t possibly know about you and your life.

I didn’t answer the phone today, other than for Susan and for Tony and his son, Anthony, who were coming up for a visit. Everybody else went straight to voicemail, including a very nice young woman who was calling to check in on us (I won’t reveal her identity or what her relation to our lives is). In her message, she said that she hoped I was able to relax this weekend.

I had to laugh at that.

I am not being condescending and I hope I don’t come off that way. This young woman is very nice and meant well. She was simply wishing me well, which was very kind. I laughed only because the idea of “relaxing” at all, let alone on the weekends, is now an alien concept to me. I know the weekends are supposed to be for relaxation, and that saying you hope someone is having a relaxing weekend is just common decency. But again this brings us to frame of reference. This woman has a very stressful and demanding job (which I can’t reveal). I imagine her workweek is long and arduous. So for her, the weekend is a welcome respite.

For me, the weekends are harder than the weekdays, because at least during the week I get a few hours of break while Jani is in school. No school on weekends means no break. It means no relief from the constant conversation. It means going from activity to activity, trying to keep Jani stimulate and engaged in this world, just as we had to do when she was younger, before her illness became acute. It means never stopping from the moment Jani wakes up until she falls asleep from the meds twelve hours later. I get through it because Jani needs it, and, I am sorry to say, because I know it will end.

That is my life. That is Susan’s life. We get up in the morning, knowing that the only thing we might have to look forward to is the end of the day when Jani is safely asleep, having survived another day without going back in the hospital.

But every so often, we get lucky. Every so often, we get a moment of pure happiness. We get it because every so often, for a moment, Jani is purely happy. Every so often, for a moment, there is no fear of the future.

I am pretty sure the “honeymoon” post-hospital period is coming to an end. So far, Jani is eroding very slowly. Psychosis comes in like a wave hitting the beach, and the clozapin is like the tide going out. It pushes the psychosis back. Out beyond the breakwater, the waves of psychosis are still raging, but it is far enough away right now to not do major damage.

Now that the tide has gone out, we can see the sea floor, Jani’s mind, and see what damage the psychosis has left. Jani can talk about her illness now. She will tell us that she has to take her meds because she sometimes feels like she has to hit Bodhi. She tells us that this feeling comes over her and she can’t stop it. Right now, Jani will actually tell us when she feels she needs a dose of clozapin. She used to do this with the Thorazine PRN as well. She would tell us that she needed a Thorazine. I see this as evidence of her effort to fight her illness. She will tell us that she sees a rat, but it is not bothering her right now. Today, when she started talking to 80, a little girl she sees, she followed this by looking at me and saying to 80 that I would probably give her a “Clozi” now. I said no, she was fine. Of course I was nervous, but I didn’t want to jump the gun and give her meds early and end up repeating what happened with the Thorazine where we kept increasing the dose. I can deal with her occasionally playing with people who aren’t there. It is the violence that I watch for, and so far the clozapin is keeping that beyond the breakwater. Sometimes, when I am not talking to her or are engaged in something else, Jani will come up to me and do what is a combination hug/head-but. She will go “Daddy, Daddy, Daddy” and drive her head into my chin. I think in these moments she is fighting with it.

Of course, for those who saw her in the hospital or otherwise saw her in a psychotic state, she is doing “great!!” Sometimes this is actual happiness on their part. They don’t see the warning signs because they don’t live with Jani. Sometimes, we detect a slight hint in their voice that “Jani SEEMS like she is doing great right now!” really means “She seems fine to me. What are you guys talking about?” No matter how many times Jani ends up in the hospital, as soon as she is “fine,” meaning outwardly functional, some people we know immediately revert to into their previous pattern of thinking that the problem is Susan and me. We just can’t handle Jani.

Or maybe Susan and I are just being paranoid.

Unfortunately, it seems that all parents of mentally ill children go through this. Our children are either monsters and deviants that must be locked away or they are fine and we are the problem, depending on whether they are psychotic or not. The effect of this is why it is so hard to get help for mentally ill children and their families: when not psychotic, which is most of the time, they look “fine.” Unlike children with physical illnesses, there are, during periods of sanity, no obvious signs that there was ever anything wrong.  So we parents end up sounding like we are nuts and we get judged in ways that parents of cancer survivors never would.

During the average day, there are several moments of near or full-on psychosis, yet unless you spend every minute with us, you won’t see it because on the meds it adds up to a total of maybe an hour a day. Jani may be hallucinating constantly, and UCLA believes she probably is, but you would never know it if you only spend a short amount of time with her because she can hide it.

What we, parents like us, need the public to realize is that these kids have developed survival strategies to deal with their illness. They can hide it for a little while but eventually it will get to be too much for them. But typically the only ones “lucky” enough to see the dam breaking are the parents.

And quite often kids like Jani will not reveal what they see, hear, and feel until they trust you, and you have to earn that.

So to you, Jani is “fine.” Jani is “doing great.” Yes, she is, but Susan and I can already see the tide coming in again. Right now, every so often, the waves of psychosis get beyond the breakwater and make it to the beach of Jani’s mind. However, they are pretty weak right now. Not tsunami strength.

Is this the meds or the fact that Susan and I are working overtime to keep Jani stimulated and give her fun moments? Having seen so many meds work for a while and then stop working, I am hesitate to place my faith in the medication alone. I don’t entirely trust the medication to keep Jani’s illness beyond the breakwater. We give her the medication because it is better than nothing at all.

At the same time, right now we are able to keep Jani stimulated doing things that she used to enjoy, but then stopped drawing pleasure from when her illness became really severe. I am under no illusion that this will last forever. You can’t hold back the ocean forever. Just ask the Dutch.

Susan and I are not waiting for the next time the water overwhelms us. We are constantly scuttling to and fro, patching holes in the dam. We can’t wait, because the next time the tide comes in, and it will come in, she might drown.

And I know any of you would do what it took to save your child from drowning. That is all we are trying to do. Various media types call Susan and I “heros.” We are not heros. If your child was drowning, you would do what you had to do to save them, even if it meant risking your own life.

The only difference is Jani is drowning slowly.

We got through this weekend and even had one of those rare moments where I forget about the future. Tony and Anthony brought a rocket, and we had fun firing it about 500 feet up in the air in an undisclosed location (it turns out it is actually illegal to fire rockets in California). I got Jani interested in the rocket firing by telling her to select a rat to go into “space.” She loved that and selected Sunday the Rat. Since one of her rats was “aboard” she was intently focused on the process of preparing the rocket and its launch. After the rocket parachuted back down, Jani ran to it and gave Sunday a “high four” (since rats have four toes on each paw). She was happy.

Will I pander to her delusions to keep her engaged and happy? You better believe it. I will do what I have to do to keep her from drowning.