As I write this, it is 10:50pm August 7th, 2010. Eight years, two hours, and six minutes ago, Jani came into the world. Tomorrow is her eighth birthday.
We have made it eight years overall, five since Jani became anti-social and preferred the company of what we then thought were her imaginary friends, three years since Jani became violent and her first hospitalization, two years since her diagnosis and the eight hospitalizations of 2009, and one year since we divided the kids into two apartments with Susan and I alternating nights.
Right now, rent remains unpaid on Jani’s apartment (I managed to pay Bodhi’s). Thankfully, the eviction process in LA County takes some time, so we are not under immediate threat yet. We will not be evicted before September 20th, at which point I can withdraw my 457 retirement account which I accrued my first year teaching at CSUN.
Rent for both apartments monthly is 2600 dollars. Right now I make $900 a month after taxes and contributions to health/dental insurance/retirement from the two classes I taught last spring. On top of that, I am receiving $1800 a month in unemployment (which legally I can take since I was not offered a class over the summer). Susan lost her unemployment for a few weeks when her final extension ran out. Then Congress extended unemployment benefits, giving Susan an additional $300 a week until the $1600 allowable balance runs out, although we didn’t have that in July, so I won’t count it. Finally, Jani gets $200 a month SSI disability. Total income for the month of July was $2900, which theoretically would give us $300 left over after paying rent, assuming that we didn’t spend anything through July, which of course we did. On top of rent, add about $200 in utilities, $200 for Sprint’s Everything phone plan (since Susan and I are rarely together cell phone is how our family functions over distance), $184 for car insurance (thankfully, both our cars are paid off), $100 a month to ICPS, the company that handles Jani’s blood draws and Clozapine refills at the pharmacy, $180 to AT&T for U-Verse internet/TV combo for two apartments ($90 each), and $480 a month for Bodhi’s preschool at Kindercare (he goes three mornings a week), and approximately $500 for food and gas.
As you can see, there is a serious gap between income/expenses. I feel like Lady Madonna in the Beatles’ song: “Lady Madonna, children at your feet, wonder how you manage to make ends meet.”
Not very well, John.
This fall I am scheduled to teach three classes, which will increase my income by $600 starting in October (the first pay period for the new academic year). However, the unemployment of $1800 disappears because now I am working again. Net loss of $1200. I don’t expect Congress to keep extending unemployment benefits (how can they?) and besides it is not like Susan can really work anyway-at least one of us always has to be with Jani because so far she has not managed to be able to go to school for more than an hour.
Bodhi’s speech and developmental delays means he will receive free preschool starting in January, but that’s January, not now. And he needs preschool. He does well there and we don’t want to pull him simply because we can’t afford it. How silly.
Moving is not an option. Forgetting for a moment that moving is a major life change and Jani is struggling over the minor life changes that resulted from the end of her three times a week occupational therapy during summer school and that putting Jani through a move when she is still pretty fragile, although getting stronger, could potentially undo all the progress she has made in the last year, it would mean moving Jani out of the Newhall School District, and we need to stay inside the Newhall School District. Despite some of our early struggles, which was really just all of us, including the school district, trying to figure out how to deal with a situation that none of us had any experience with, the school district has learned, just like we have, and they have and continue to do whatever they have to do to help us keep Jani out of residential. Newhall hasn’t always gotten it right, but they keep trying and we now have a very good relationship with them. The whole district knows Jani and sincerely cares about her well-being. But we all got to this place because they got to see Jani descend into her illness. It was the school district that had to call the police in January of 2009 because Jani was trying to throw herself through doors and windows. Once you see severe mental illness, you can either run or you can step up to the plate, and slowly but surely Newhall has stepped up to the plate. They have never pushed residential on us, although it remains their official recommendation via her IEP. Despite this, they never washed their hands of Jani when we said no, even though I confess that in the heat of the moment (as some of my older blogs will attest) we washed our hands of them. Everybody in the District knows Jani, knows her story, knows her struggles, but they also know the joys of Jani. They have seen the good and the bad. And they continue to claim ownership of her, despite the cost to the district and the burden upon teachers and staff. They are willing to do what it takes, even if they have to bend the rules to do it, even if they have to work a little harder. I am very grateful to them. They are a fine group of people. In way, they are part of her family. We are her immediate family; UCLA is her second family, and the Newhall School District is her third family. And like all families, we disagree and sometimes fight. But we all respect each other.
Jani is entering third grade. In three more years, she will no longer be eligible for Newhall and will pass into the hands of the Hart Union High School District, which has far fewer options. In three years, I will have to begin the process all over again with Hart. And I will, even though I hope that the Jani Foundation will be able to found its first day school for mentally ill/autistic kids by then. I will have to start all over again with Hart, fighting with them just as I fought with Newhall, even if Jani isn’t in Hart. I have to because I have to do it for the other mentally ill kids within Hart, kids who right now end up in Hart’s “continuation school,” which looks an awful lot like a very nice prison. In a sense, Jani will have it easier because she has been diagnosed. I know I have taken shots from fringe elements about “labeling” Jani, but they don’t get it. I can understand an adult being afraid of the stigma of the label of mental illness, but for a child inside the public school system, it can save them. Once a child is diagnosed, they cannot be punished for what they cannot control. They are ill, not brats or “bad kids.” Unfortunately, our culture likes to demonize teenagers anyway, so I fear that a lot of mentally ill teenagers get thrown away by their school districts. I have to fight Hart because Hart wouldn’t throw away a physically handicapped teen, yet they still throw away their mentally ill students, not realizing the gifts that these teens have to offer society if we will only offer them our support and commitment. You give me an appropriate diagnosis, appropriate and moderated medication(s), and therapy offered by sincere and caring professionals and teachers who see the value in every human being no matter how they sometimes act, and I will empty every continuation high school in America and I am going to start with Hart.
Funny how I moved from talking about money to this. I think I needed to remind myself that money, although very helpful, isn’t the most important ingredient to improving the quality of life of mentally ill children and teens: it’s effort and the commitment to make that effort no matter what the cost to you personally.
And the end of the day, as long they know you care, as long as they know you won’t walk away when things get hairy, as long as they know you can distinguish between their illness and them, there is always hope.
So what have I learned after eight years?
Some of it is hard.
I have learned that Jani has an illness that will always be a part of her, much like someone with type one diabetes will always have diabetes. My friend John is a type one diabetic and he will have to shoot insulin for the rest of his life, simply because his body doesn’t produce it naturally. Jani will have to take some medication and monitor her schizophrenia for the rest of her life, simply because her mind doesn’t quite work right. It is a biological defect, but one of the best things about our society is that we are progressive and we continue to strive to appeal to the “better angels of our nature” as Abraham Lincoln put it. What I love about America is that we keep trying to get it right, to live up to our Bill of Rights, to do a better job, to be better people, even though we often fall short. It took us a long time to accept that those with biological defects that manifested physically were still complete human beings, that a defect does not define a person. I don’t mean “defect” in a derogatory sense. We are all, in some way, “defective.” Life itself is defective, but it adapts to those defects and perseveres. Those with mental illness are fighting what is essentially a civil rights battle, just as gays, those with physical disabilities, minorities, and women fought before them (and continue to fight).
Like Dr. Martin Luther King, I have a dream as well. My dream is that one day mentally ill children, teenagers, and adults will be as much an accepted part of our society as anyone else. Instead of marginalizing them or attributing their behaviors to moral failings, we will embrace them. We will help them through their crises with love and patience. We will understand that a psychotic episode is no different really from getting the flu. Who they are is still there. We just have to help them get past this rough patch.
And sometimes this just means holding their hand until they come out of it. Yes, I know you see things that I can’t see, that are as real to you as you are to me, but I am real, too. I am here. Feel my hand. Know that where-ever your illness takes you, I am there and I will be there when you come out.
The second thing I have learned is that I am not as strong as Jani’s mental illness. I can never defeat it outright. As one of my blog readers said about his own schizophrenia, it is about negotiation. I have to negotiate with the schizophrenia. I acknowledge that it is not going anywhere, but neither am I. Stalemates don’t work so I have to keep negotiating with it, talking to it, initiating discussions with it. As my reader also said, it isn’t really trying to “kill” Jani, although it is capable of it. It is just trying to make sense of things. Or it wants to play and doesn’t understand that its “fun” can hurt the life and well-being of the person with whom it shares a brain. Schizophrenia literally means “split mind” in Greek. Although this causes laypeople to confuse it with Multiple Personality Disorder (now disassociative identity disorder), the name is actually appropriate. Those with schizophrenia have to share every thought, every feeling, with their hallucinations, and in turn their hallucinations share their thoughts and feelings. It is like two people sharing the same brain, but they are not distinct personalities. Instead, thoughts enter your head constantly that you don’t actually “think.” Voices other than your own tell you to do things. You can try to ignore them (and many adults with schizophrenia do learn to do this) but it is harder for a child. People can and do lead very successful lives despite having schizophrenia, but it takes more effort than us neurotypicals will ever know.
The other day, we went to see our first movie as an entire family. It was also the first movie that Jani managed to make it all the way through. She wanted to leave about 40 minutes in but we managed to convince her to wait, telling her it was almost over, and then it was. The film was Cats & Dogs: The Revenge of Kitty Galore … in 3D. It was my first 3D film since I was a kid and 3D has come a long way since then. In the Eighties, 3D was just a red/blue blur oozing from the screen. Unlike 3D thirty years ago, this 3D doesn’t come out of the screen, which is what I had been expecting. It makes objects just appear in the space above your head or in front of your eyes. Objects move from empty space into the screen and not the other way around. Honestly, it freaked me out a bit. Jani put the glasses on and then took them off, preferring to watch without them, which leaves the screen slightly blurry. I asked her, “Jani, is this what you see everyday?”
I realize it was a leading question, as they would say in the legal profession. It’s not like Jani put on the glasses and went “Wow! This is what I see.” But then again, how would she know? Her every waking moment is like a 3D film with objects appearing above her head. Why would a film experience that replicates that stand out for her?
I am always trying to understand what Jani is experiencing so I hope it was somewhat close. I found it extremely hard to ignore the objects that would appear. Every time, they would draw my attention away from the screen. My head started to hurt and my eyes strained under the effort of having to watch two simultaneous things: the film on the screen (which would represent reality) and the 3D image (the hallucination).
Third, I have learned that there are aspects of our world Jani simply cannot deal with, and that when she gets scared or nervous, she runs back to Calalini. More than a year since diagnosis, we have learned that in some ways Jani’s world and ours can coexist. We have learned how to avoid conflict between the two that would send Jani back to the hospital. Unfortunately, this means suppressing any negative emotions. I can’t ever get angry or even mildly frustrated, because it produces uncertainty in Jani and she cannot deal with uncertainty. In order to survive, she strictly structures her world. I am not talking about getting angry with her. I am talking about getting angry or frustrated about anything. I don’t know if this is true of every mentally ill person, but the ones I have met, including Jani, are, when not in a psychotic state, EXTREMELY sensitive to the emotional states of others. It is like they are emotional bloodhounds. Maybe this is a defense mechanism that they develop over time in order to know who they can trust to melt down in front of (because every schizophrenic I have known is able to “hold it together” with some people but then fall apart with others). This is because they know that their safety depends upon knowing who they can trust. This is why many mentally ill kids (although not Jani) seem to do great at school and then flip out at home, leading teachers and therapists to conclude the source of the violence must be something “in the home.” It isn’t because they are “better” at school. They are still struggling there as well, but they know they have to hold it together there. But at home, they are safe. They can let go, give up the fight they have been fighting all day, and rage away knowing that at least their parents or caregivers are used to it and any violence or destructive behavior won’t fundamentally alter the relationship between parent and child.
Which brings me to my fourth lesson: The illness cannot alter the relationship between you and your child, which is extremely hard when you have more than one child. Today, at McDonald’s, Jani saw Bodhi pick up her Happy Meal toy. He was just curious. Jani yelled “Hey! That’s mine!” Susan quickly took the toy away, robbing Bodhi of the change to tactilely experience his world. However, she did it to prevent Jani from escalating. We told Jani it was okay now, but it wasn’t for her. She took two of his Hot Wheels cars, including one he had just earned for doing a poopy in the potty, and threw them in the trash. I made an attempt to go in after them but could only take so much rooting through ketchup and milk before I had to withdraw my hand. We never recovered Bodhi’s cars.
I was very upset with Jani, just as I was a few days earlier when, while changing the water of the two Betta fish her therapist got to engage Jani, she spilled water on herself. She ripped off her shirt and tried to leave. Her therapist couldn’t let her leave topless. Jani, frustrated, but with no way to express it appropriately, took the live plants in the fish bowls and tore them up. Now the Bettas have nowhere to hide (I can’t afford even the couple of bucks for new plants right now) and are very nervous.
I was upset with Jani because in both cases she hurt others. I don’t care if she hits me but I hate it when she does something to hurt another life that is defenseless and didn’t do anything to deserve her wrath.
So I got angry with Jani. I didn’t yell or anything, but it was clear that I disapproved. All this did was make Jani feel guilty, which made her want to get away from everybody. Guilt is fine as long as it motivates change, but for severely mentally ill guilt is a useless emotion because no matter how guilty they feel it won’t prevent them from doing it again. See, Jani can learn, but unlike “neurotypicals,” it is a much bigger struggle to apply what is learned to alter behavior, because for her the compulsions come before she even realizes what is happening. When she spilled water on herself or when Bodhi touched her toy, all the knowledge of what was right and wrong wouldn’t help her because right and wrong are logical ideas and in a psychotic state Jani isn’t logical. She cannot slow her mind down enough to process through the consequences.
But tonight I realized something. Yes, she threw away Bodhi’s cars… but she didn’t hit him. She didn’t even try to.
Yes, she tore up the fish’s plants, but didn’t hurt the fish.
Could it be that she is slowly learning a form of control of her violent psychotic rages, to direct them at an inanimate object instead of at a living thing? Perhaps destroying something of value to the person her psychosis is upset with placates the psychosis but also allows Jani to keep from hurting others in a physical manner.
As hard as life still is, as much as I miss spending time with my wife (we haven’t been intimate since Jani was last in the hospital six weeks ago- no big deal but we could conceivably go months if Jani remains out of the hospital), as much as I can’t even talk to Susan without Jani trying to get my attention, as much as I am disappointed because last month things were going so well I actually wondered if we could maybe live together again under one roof and in the last week I have seen that Jani is still not ready to live with Bodhi, as much as I cannot pay for two apartments but I am not going to send Jani to residential just because I don’t have the money (I will literally beg on the streets before that happens-yes, this hurts my pride to have to beg for money when I have an MA and teach college but screw my pride-I am trying to keep my family together), Jani is actually slowly, gradually, learning to live and function with her disease.
I just need to stop worrying about tomorrow and live in this moment. In this moment, on Jani’s eighth birthday, we are all still here, still a family.
But this is not just about us, not just about Jani. I still get emails from people offering assorted “cures” to Jani. What always bothers me about this is that the only reason they even know Jani exists is because of the LA Times or Oprah or 20/20 or Discovery Health. Jani existed long before she was on TV. I don’t dispute that these people are well-meaning, but none of them have ever offered help to the hundreds of other mentally ill kids we have come to know. It is just Jani and they act like if Jani is miraculously cured, then our world is alright again. No, it won’t be. Once you have loved someone with a mental illness, you can never go back, because now you know. You can never look at those raving on street corners to the thin air the same way again. Once you are in the parenthood of mental illness, you can never leave, because any child could be your child.
You learn that when your child is doing well, it is by Grace and that every step you take is somewhat shakey. You will never be on terra firma again. Once your child has had mental illness, you go to sea, never to return to the land you once knew.
Even if Jani was suddenly cured tomorrow, she would still have lived through what Mari, Logan, Brenna, Becca, Hannah, Annabelle, Teagan, Maddox, and countless others live through. Once you have been to the world that these kids live in, you are never quite the same. It is a brotherhood and sisterhood you never leave, cure or no cure.
These kids are survivors, just like cancer survivors, and like cancer survivors, they can be in remission, but they are never cured.
So tonight, on Jani’s eighth birthday, I dedicate this blog to the survivors, to all the children living with mental illness and their families who are still here.