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Another Brick in the Wall

This is the last night before Jani comes home from UCLA. I should be in Bodhi’s apartment, lying in bed next to my wife, because I will not get a chance to this again anytime soon if not ever again.

 

 

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…where we came in?

 

“So ya

Thought ya

Might like to go to the show

To feel the warm thrill of confusion and

That space cadet glow”

 

I remember, five months ago, on a warm day in mid-December, when we met the second group of psychology interns from the local community college. They were all volunteers. They had all signed up to work with Jani. There were ten of them then, all with that space cadet glow that comes from being chosen for a special mission. They had watched the Oprah Winfrey Show, which is easier than reading the LA Times I suppose. They had seen us talk about Jani’s potential for violence. Yet none of them seemed the least bit worried. I would have expected some trepidation, some fear. It would only be natural, after all. Everything that they knew of Jani came from the press, which focused on her propensity for sudden and unpredictable violence. They were volunteering to work with a child that suffers from psychosis. I would have expected nervousness, but there was none. Rather, they seemed excited, like they were about to embark upon a school trip.

 

What they didn’t realize, however, is that this is a school trip you never come back from. The bus never brings you home again. Once you are on and the doors close, you are on for good unless you decide to open a window and jump out.

 

Of course, it didn’t help that Jani bounced into the middle of the group and then proceeded to the playground (we were at a park). Other than the fact that she referred to friends nobody else could see and the fact that she could not play alone (she kept asking for me) there was nothing to indicate that Jani was any different. She seemed very much like a child that day, if a bit imaginative and eccentric. A few of the interns made a tentative attempt to connect with her that day, asking her about the stuffed animal she had brought along and playing “hide and seek” with her. It was deceptively simple. All they had to do was play with Jani. What an easy internship.

 

So they got on that metaphorical bus that is our life with Jani. And it wasn’t until they realize that I wasn’t going to stop to let them go that the problems began. Like I said, once you are on there is no getting off. If you are going to get off, you are going to have to jump.

 

“Tell me is something eluding you sunshine?

Is this not what you expected to see?”

 

Only three of those ten interns still remain. Eventually, for on reason or another, I had to kick them off and I couldn’t even slow down to do it. Because I am not driving this bus. Jani is.

Mental illness is not a death sentence. But it is a life sentence with little possibility of parole.

 

When Jani’s violence first appeared, when this journey began, countless people, including medical professionals, told us we had to “take control” of the steering wheel from Jani. And in those early stages, I tried. I tried to take control. But I couldn’t. Jani keeps driving. She has to. She can’t stop or even slow down because if she does 400 the Cat and Wednesday the Rat will catch up with her.

 

We thought hospitals and doctors could stop the bus. But they can’t. They can only slow it down by giving her medications. Even all the Haldol doesn’t stop the endless chase that Jani experiences. All it does it fog the back window so Jani can’t see them as well and so can pay more attention to the road in front of her. But unfortunately, her hallucinations are like the gremlin in that episode of “The Twilight Zone” with a young William Shatner. They are all around Jani’s bus, pulling the spark plugs and loosening the lug nuts that hold the wheels on. They want her to crash.

 

So what has this done to me, three years in? Seven really.

 

“If you wanna find out what’s behind these cold eyes?

You’ll just have to claw your way through the

Disguise”

 

My eyes are definitely colder. I have gotten colder. My entire life revolves around keeping Jani on the road, patching up the damage from the gremlins as best I can, trying to guide Jani so she doesn’t crash.

 

Eventually it became clear that Susan and I alone could not watch the road, looking for potholes and hairpin turns, while also trying to patch the pieces of the bus that are daily ripped away by Jani’s hallucinations. But most wouldn’t even get on the bus with us. Wraparound, the social service provided under contract to the Department of Mental Health, refused to get on. Maryvale, a so-called “residential treatment facility” here in Southern California considered it but ultimately decided not to get on. The only option we had was to send her to out of state residential facilities, which meant that we would have to get off the bus and leave Jani alone. We wouldn’t do that.

 

Even when Jani was in UCLA, the bus just went in circles, but it never stopped. The nursing staff and the school district staff and Jani’s special ed teacher did, to their credit, climb aboard, but they tried to grab the wheel. They tried to bend Jani to their will, and if Jani was a neurotypical child, if all she had was a “behavior” problem, they would have succeeded. But you see Jani is only able to drive herself some of the time. And often you grab the wheel, thinking you are taking it from Jani, only to find that a command hallucination has taken over Jani. She is not in control anymore and so the bus pitches all over the road, tossing you backward and off balance. You get thrown to the floor, which I know Jani feels guilty about, but when you get up all you see is her reflection in the rear view mirror, so you assume it was her who knocked you off your feet. Just like nobody else other than William Shatner could see the gremlin ripping apart the engine of the plane, nobody else can see Jani’s gremlins, ripping her apart. Nobody ever can until it is too late and people are dead, like at Virginia Tech, and suddenly you can see the gremlins.

 

I have been tossed around too many times to count, but I can’t get off. I am her father. This is my job. I have to stay. But for anyone else who sees us, be it doctors, social workers, educators, or even our own interns, all you are seeing is us passing by. And so you make a snap judgment that we are speeding.

 

No shit. But I am not driving this thing. I am just trying to hang on to my daughter, to keep her on the road, because as long she stays on the road, she gets to stay alive for another day.

 

The worst part, in my mind, about being human is that eventually you are bound to disappoint others. Eventually, you will lose the ability to hang on to the wheel and you will scream for somebody else, a friend, a family member, to take the wheel before your sweaty palms let go. And for whatever reason, they can’t get there fast enough. They can’t spot you. Maybe because they are trying to hang on to their own steering wheels. Maybe because this ride has gotten bumpier than they expected. Whatever the reason, they can’t be there when you need them. But when you are the parent of a special needs child, you can never let go. So despite your exhaustion, your fingers tighten on the steering wheel. You get a second wind, but it is a second wind driven by anger.  In times of despair, anger is often the only thing that keeps us going, the desire to spit in the face of God. So you throw the person who you perceived failed you off the bus. You scream at them to get the fuck out. And then ten miles down the road, when the anger is gone and the exhaustion has returned, you regret throwing them off.

 

People fail us everyday and we fail others everyday. Most of the time, it doesn’t matter. The failures are minor. But when you have a mentally ill child who is fighting just to have a life, the failures of others become magnified a thousand times over. They become betrayals.

 

And each betrayal becomes another brick in the wall that you build around yourself and your child or children.

 

When you first start this journey, you are desperate for help and you believe that there has to be help out there. But most of the time, there is no help at all, because we don’t really do a very good job of helping each other in our society. The nuclear family that became the staple of American and European civilization eliminated the extended support network that allowed families to function with somebody mentally ill. And every time you think you have finally found some help, it never turns out to be the help that you need.

 

So eventually you stop asking for help and you start isolating yourself, building the wall around you and your child to protect you from a society you no longer believe in, because they failed you when you most needed them.

 

UCLA was the first time we felt we had found a group of people who would ride the bus with us, wherever Jani might take us. This was born out of the fact that UCLA battled Blue Shield through every hospitalization of 2009. They got on the bus not worrying about whether Blue Shield was going to pay the gas bill. UCLA became Jani’s second home, an acute facility that defied its overlords the insurance company and the hospital administrators to treat Jani over the long term.

 

And then something changed.

 

Jani’s last three hospitalizations, all in 2010, have been “turn and burn” just like how normally chronic mental illness is treated in America’s psychiatric units: bring her in, pop some pills in her mouth, and send her back out again. Everybody knows that the rapid release of the chronically mentally ill is a disaster. It only sets them up to have to come back again, often within days of the original release. Kids always calm down in the hospital, because it is a highly structured environment with constant therapeutic activities. But at the first sign of stabilization, the insurance companies stop paying and the child is released. I wonder if the UCLA fellows seriously expect that this short term stability is going to hold. I wonder if they are jaded enough to place bets. And when your child cannot be stabilized for a decent amount of time, when the “turn and burn” fails, then they bring up out of state residential. UCLA is a minimum security prison. If the child fails to “thrive” on the med cocktail, if the rate of hospital inpatient recidivism is high, then everybody starts pushing you to send your child to the maximum security prisons, the out of state residential facilities.

 

In reality, there is not much difference between how the State of California treats mentally ill children and how they treat repeat criminal offenders. And the inpatient doctors and the social workers and the DMH contracted agencies become the judges pushing for a life sentence. As the parent, you are either the offender (in the beginning), the partner in crime to your child’s behavior, or, later, the victim of your child’s mental illness. Social workers and therapists place their hand on your arm, eyes full of sympathy, and tell you you need a life, too.

 

What kind of life is that without my daughter? What sort of life do they expect me to have without her?

 

Last year, UCLA kept telling us that Susan and I “needed help,” that we “needed support.” Of course they had no suggestions on how to get this, but this was the mantra that we heard over and over again.

 

And then we got it. We got the intern program. The interns did what Wraparound wouldn’t do. They didn’t judge our parenting. They just helped.

 

During this last hospitalization, the UCLA staff and doctors were quite obviously hostile to the interns that came everyday to visit Jani, doing what I had asked them do, keeping their schedule with Jani. I wanted them to come because I wanted to maintain as much of a connection between Jani’s life outside the hospital and her life inside it. I wanted her to know that her life would still continue even inside the hospital.

 

Were they consciously trying to destroy the intern program, to interfere with it, to make it harder for the interns to work with Jani? There is no way to know. Maybe I am just being paranoid. It happens when you have built the wall as high as I have.

 

I texted Jani’s teacher when Jani first went in the hospital. I never got a response. I called the Director of Pupil Services twice and he never returned my calls.

 

Not responding to a text message that one of your students is back in the hospital is just plain rude. I wonder if Jani’s teacher has burned out on her. I can understand this. She spent the past three months continually trying to engage Jani in classwork or activities. I can imagine her frustration every time Jani refused (compounded by the fact that she is the only student at this time). I know what it feels like to invest time and energy in Jani and feel like you are trying to communicate through a wall. The problem with Jani’s teacher and the school district in general is that, by nature because of their training, they are always looking for external factors. And when they can’t find any, they are at a loss, faced with a child they can’t teach. A year ago I would have blamed them for giving up. I don’t anymore. I know how hard it is to take this ride.

 

Although in truth you have to keep trying to teach Jani because for nine days you may get nothing, but on the tenth day she will suddenly open up. Then you feel joy, like you matter, like you are important, only to have that joy crushed when on the eleventh day she retreats again into her own world or starts “acting up” again. And you don’t know how many days you will have to go through until you get another chance.

 

I think that is also what has happened to the UCLA staff. After more than a year and eight hospitalizations, they have seen her make incredible progress, only to feel the bitter disappointment every time she comes back again. And so gradually, their hearts harden, to protect themselves from the endless up and down, from feeling like for every step forward, they take a step back. Humans are built to travel, but Jani can’t really move.

 

But we still had the interns, who became more than we ever expected. They became Jani’s friends. They gave us respite. And so when somebody does so much for you, your expectations increase, setting you on the road to disaster. We started to believe that our interns, at least some of them, would be with Jani and us forever.

 

But nothing lasts forever, does it?

Before Jani went back to UCLA this most recent time, she had become so dependent on the interns that she could not function without them. But the interns cannot stay with us forever. They have lives to get to. They are going to have to get off the bus and already one who I most relied on is asking me to slow down. I can’t, of course. I am not the one driving. Jani is. So this intern is jumping off and slowly, over the next several months, the rest will jump off too.

 

The division chair of this particular community college wants this internship to become a service learning opportunity, open to all students. Instead of interns committing to an entire semester, we will have service learners who rotate in and out every three weeks. First, they can’t learn anything in that time. Second and more importantly, you have to be in Jani’s life a long time in order to have any hope of being able to compete with her hallucinations. The “friends” inside Jani’s head may bite her and scratch her when she doesn’t hit like they command her to, but they also never leave her. They never abandon her. It is very difficult for real people, who have their own lives that don’t revolve around Jani, to compete with that. Jani’s hallucinations make her feel like the center of the universe, because for them she is. She is their entire focus. Only Susan and I can possibly come anywhere near being able to compete with that.

 

So the intern program, at least as it exists for Jani, is probably entering the final stages of its existence. The interns have been invaluable to us and friends to Jani, but they cannot come like clockwork forever. Eventually, I am going to have to let them go and the fear of what will happen to Jani when they leave makes me angry. Because anger is easier to deal with than heartbreak. It is easier to put another brick in the wall to isolate yourself from society than deal with the pain that comes from being let down, whether the other party meant to let you down on or not.

 

I know that I contributed to this decline, barking orders at them like a military drill instructor, not because I intend to be an ass but because I have spent the last two years of my life living moment to moment, dealing with crisis after crisis. I have become such a soldier in the cold war against Jani’s mental illness that I have forgotten how to be an civilian, or even civil. Like a soldier returning from combat, I don’t belong in your world anymore. I can’t relate to it anymore. I have too much time in Jani’s world.

 

Those who have tried to ride the bus with us still only ride once a week. We ride forever.

 

Once again, I am being asked about what we are going to do in the future, only this time it is the interns themselves asking, because they know they can’t stay forever.  I can’t think about the future. The future is too terrifying. I can’t make plans. I am paralyzed by fear. All I can do is hold the line now. I cannot imagine any life other than the one I need now, where everything revolves around keeping Jani on the road. I can’t plan for a destination. All I can do is focus on the road and follow Jani wherever she goes.

 

So, on the eve of Jani coming home on 2mgs a day of Haldol which slows down her ability to carry out the will of 400 the Cat, but also leaves her depressed because her “friends” are asleep, she is about to yet again lose more flesh and blood riders on her bus. Eventually, it will be just me, Susan, and Bodhi again, alone. Nearly two and half years after we started this ride, it feels like we have come back to the same place we started: alone and without help.

 

We are stronger this time, so the prospect of being alone again behind the wall of Jani’s schizophrenia doesn’t scare me.

 

I just don’t think I can let anyone else on the bus anymore. It hurts too much when they have to leave.

 

I hate goodbyes, so I will let you off here.

 

 

Isn’t this…

 

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9 comments on “Another Brick in the Wall

  1. Sorry if this is a duplicate (not sure if first comment took). I read that doctors noted autism/asperger’s. I wonder if Multiplex Developmental Disoder was ever mentioned? It is a reserach category (currently) but includes autistic and schizophrenic type features: http://childstudycenter.yale.edu/autism/mdd.html Jani does appear to present with autistic mannerisms (stimmming, eye aversion, social disconnect, fixation on numbers, fantasy) Just a thought.

    Note from Michael: No, the other comment showed up as well. Believe me, all aspects of Autism have been ruled out unfortunately. Jani actually is very social when not in a psychotic state and she has never avoided looking people in the eye. She does not present with autistic symptoms. Every doctor who has ever seen her as eventually ruled out autism.

  2. I can definitely understand why you feel that away about the interns, Michael…letting people near when you know they’re going to be on their way out again soon must be agony-I can hardly stand to let people close to me when I DON’T know they’re going to leave again, ha. The abandoned kid at the bus stop that lives up inside me never ever stops hurting, I suppose, if you want to get psychological about it.

    I guess I look at it different? To borrow your use of metaphor, I think of all those families as rafts on the sea, the occupants frantically bailing to keep above the waterline. UCLA and the school districts are the Coast Guard hovering above, occasionally throwing down a flimsy life raft if someone goes over or a few bottles of water. They toss down cursory gestures that keep families alive, but they don’t do much in the way of actual search and rescue.

    Some interns on your ship couldn’t learn, and became dead weight. They couldn’t bail fast enough, they didn’t know what to do with the buckets, they realized what hard work it was and gave up, jumping overboard to go back to their own ships safe at the harbor. The ones that stayed, the ones that learned, they are the important ones.

    They aren’t abandoning Jani, though it must feel that way to her and to your family. What they learned from you guys will stay with them forever, and change how they treat their young patients in the future.

    You showed the interns how you learned to bail and yes, it is terrifying to see them jump ship and start swimming away. But they’re not going to give up on Jani or the others. They’re going out to tell others how to stay above water…and soon there will be more swimming out. They’re coming back with re-enforcements, they’re going out to tell the world about the massive ship-wreck and to show the world exactly what the Coast Guard is up to (ie, not much)

    I hope this made some kind of sense.

    Thinking good thoughts for Miss Jani’s release date, and for you, Susan and Bodhi today.

    Note from Michael: I hope you are right. I just hate being abandoned. As for Jani, she is no different from when she went in the hospital. UCLA is pretty much a waste of time at this point.

  3. BTW, I agree that three weeks is DEFINITELY not enough time. That’s ridiculous. You could barely get to know a nuerotypical child in that amount of time, let alone one like Jani. To clarify, in my previous comment I’m speaking specifically of your fear watching the good interns leave. One of the most painful things I ever had ot do as a student teacher was explain to a kid who was thriving that they couldn’t stay in the only class they had ever felt okay in, they had to go out and drown in a mainstream class and flounder before coming back to us. Of course I kept the second part to myself. “Mainstreaming” as it’s done now is the devil.

    I hope I’m not overstepping bounds with all this. I just don’t want to see your family locked up behind those bricks if the wall gets built up too big again.

  4. I used to love those Magic School Bus books when I was a kid. I also have a copy of Some of the Kinder Planets by Tim Wynne-Jones given to me by a teacher when I moved in grade 5 that I still read sometimes. It’s about unusual kids, I don’t know if it would resonate with Jani. Does she like Shel Silverstein?

    Then again, I could be in the wrong library altogether.

    I’ve done some reading about schizophrenia in developing countries, where prognosis is said to be better, and it sounds to me like there is often just not as far to fall. (Literally, also.) Thought disorder, for instance, sounds much like thought disorder as much in translation from Indonesian as it does when I’m on a psych ward here. Western authors discuss the ways that psychotic behaviors can also be coded as bending gender norms (for both sexes) and social norms (of interrelatedness with other people) such that behaving in ways that demonstrate individual subjectivity may cause support for the mentally ill person to be withheld (see also Freud, hysteria, and modernization in Europe). The person lives in their own space physically with, but separate, and socially quite far apart from the family, even when families could help get western medicines that the ill person has responded to by integrating better while using in the past. There frequently seems to be a potential for social healing if the ill person shows rapid improvement from a spiritual intervention (which may mostly amount to speaking sternly with possessing spirits telling them to get out), otherwise the ill person may be gestured to as a disappointment and a black mark on the family’s reputation. Medical treatment may not necessarily be so different. In one instance, an Indian doctor trained in England was described as listening to a patient speak in a paranoid way, saying to the investigator, “he has paranoid ideation,” and then turning to the patient and saying something like, “your thoughts are making you worse and you need to control them.” You’ve tried to do pretty much the exact opposite of these with Jani. I think what you invoke as tradition is a particularly and especially and possibly even a very modern, American construction.

    Some authors have debated whether modern ideas of individualism make schizophrenia worse but I am not yet able to comment on them.

    Note from Michael: Wrenna, interesting ideas here. First, yes, Jani loves Shel Silverstein. Second, I continue my “controversial” interaction with Jani’s hallucinations, which really just means I talk to her about them and what they are doing rather than speaking directly to them. I do this rather than deny their existence because I don’t want to drive a wedge between me and Jani. I think so often psychiatrists and nursing staff don’t take hallucinations seriously, treating them as imagination which can be ignored, which in turn only makes the patient less likely to open up about her experiences. Just because someone is mentally ill doesn’t mean they can’t pick up on judgment and acting like you don’t believe or don’t take the hallucinations seriously is I feel very damaging to encouraging a relationship between the mentally ill individual and the caregiver.

  5. I wonder if anyone would ever consider building a residential facility that catered not only to the needs of mentally ill children, but also their families. Do you think a residential facility would be beneficial if the family could live there too? Just a hypothetical question; I know it would take millions to house everyone.
    I am sorry about Jani and the interns. I know what it’s like when you’ve come to rely on someone, and then have to let them go. While the interns were great for Jani, you, Susan, and Bodhi are ultimately the three most important people in her life, and you aren’t going anywhere. In the same respect, thought the interns will soon be gone, you’ll also still have the people that matter the most.
    Please let me know if there’s anything I can do. I graduate from college next month, and I’ll have a lot of free time. Hang in there. –Kate

    Note from Michael: Your idea about families living with their children in residential exactly describes the Village Project.


  6. Is there any way you might be able to hire your own interns without going through an agency? Maybe grab some university students in different feilds like art and music therapy, social work, pre-med and psych?

    I’m not sure what types of programs your local universities might have but if you hand picked them yourself based on criteria you’ve seen work/last longer you might find some winners who aren’t reccomended directly to you by profs or whoever you are dealing with.

    Note from Michael: Our interns were from a local community college, not an agency and we did vet them very closely, but it still fell apart.

  7. Michael

    Once again I am touched by your words. I hate to hear that a teacher did not respond to your textor any other for of communication-it makes me sad to be a part of that profession when I hear these things. But then again I know how twisted the currect educational system is right now. I am fighting daily for the needed help of a student who, in my opinion, is struggling with some very deep rooted emotional issues. If you watched this child in my room people would be surprised to see that, on a day like today when this child shut down completely, I allowed this child to sit and not paorticipate. I choose to let this be the case because I know if I try to push this child will push back-HARD and it will only spiral down hill, I hope that he heard some of the information I was teaching. I have to work hard daily to help this child take the small opportunities to learn when this child is in the right place for them, much like you speak of perhaps Jani not listening to the lessons for nine days and then on the tenth day she is able to interact and focus, this child has those moments too. I am sad that our educational system is so driven by the current high stakes testing that this child is falling in the cracks and I can’t seem to help. But like you speak of being along for the ride with Jani, I do to a very small extent-very small-understand how it feels when it seems that no one else gets it. Keep up the fight for Jani because it is the right thing to do, talk to her hallucinations because who says that won’t be the thing that eventually works, and most of all keep fighting for your daughter because you love her!

  8. Once again I am touched by your words. I am so upset to hear that Jani’s teacher did not respond to your text. In fact it makes me sad to be a part of the profession when I hear about these types of things. The current state of education is tragic when it comes to making sure that we are meeting the needs of all students. I can relate in a very small-I mean very small way-to the incredible frustration you must feel daily when fighting for Jani. I have a student, who in my opinion, is struggling with some very deep emotional issues, and for the last three years I have been trying to get the necessary services in place but it feels like no one listening and I am the only one fighting-It is difficult for many around me to understand how I can continue to “let that behavior happen” in my classroom daily and not get totally frustrated. I keep saying it is because it is the best that I can do so that the child feels safe and gets some education, eventually. Today if someone had been in my room they would have thought that I was the one who had gone “mad” because this child shut down after recess and did not complete any work for over an hour. I simply chose to let this child have the time needed to come back around because if I had chosen to fight against the child he would have fought back-HARD and nothing would have been accomplished anyway. I feel like my time is almost up and this child will be lost forever and that makes me sad. But with the concept of the project we are all trying to create in Jani’s name-I can hope that one day there will be another option for all of to reach out and find what we are looking for. In the meantime keep talking to Jani’s hallucinations because who says that is isn’t the thing that will eventually work and keep fighting for what Jani needs and deserves because she is your daughter!

  9. Michael- you and your wife have given up so much yet have so much to keep giving your children. you are truly an inspiration to others (I would say to others in similar situations, but what others are in your situation..). I truly hope that you, bodhi, jani, and your wife find peace. you both are model parents to what it truly means to love your children and do whatever it takes to love, cherish, and provide for them. Try and remember to to take time for yourselves as well, if that’s even possible. My prayers are with you.
    -Stephanie.

    Note from Michael: Thank you, Stephanie, although you would be surprised how many others are in our situation. Every time we do media more and more of them come forward. The lack of resources for mentally ill kids means Jani’s story and ours is not as uncommon as it might first appear. There are 76 families in my private online support group, all dealing with similar issues.