Month: November 2010

Oppositional Defiant Disorder

Well, the good news is that through your incredible generosity, we were able to pay both the rent on Jani’s apartment and the legal fees which we were charged because the apartment complex filed a legal request to have us evicted. I still can’t believe how fast you all came through for us. Within 24 hours of the last blog being published we had enough. I got the cashier’s check and paid rent this morning. We will not be evicted. For November at least, we will be able to stay in the two apartments.

 

Tonight I write this from Jani’s apartment, the threat of eviction gone, safe again until at least December 1st.

 

But I am alone.

 

Jani isn’t here.

 

She is back at UCLA.

 

Maybe it’s a pyrrhic victory, a battle that is won but at such terrible cost to the victor that the win is essentially a loss, because in the process of fighting to defend what you have, you lose it anyway. The phrase comes from King Pyrrhus of Epidus, who defeated the Romans in 279 B.C., but at the cost of almost his entire army.

 

I don’t feel any satisfaction. I feel like I failed.

 

Was it the threat of eviction that pushed Jani over the edge? I don’t know. Susan and I talked about it only once in front of her, and even then only for a moment. It was Friday. We had just finished dinner at Bodhi’s and I had gone over to Jani’s apartment to take out our dog. On the door I found the eviction notice. The first thing I did was call Susan back over at Bodhi’s apartment. Then I called a friend who is attorney. I had no idea what to do. This had never happened before. When I came back with Honey, I showed her the notice. She asked me what our lawyer friend had said. Jani wanted to go back to her apartment so we really couldn’t discuss it, which was good because it would not have been good to discuss it in front of her. That was it.

 

Jani is smart. Jani is perceptive. Did this push her over the edge? Did the fact that I had an extra cigarette and popped a Klonapin to calm my nerves so I get her into her pajamas and read to her give it away?

 

She never said anything or asked about it. That night, after she was asleep, I wrote the blog. When I woke up the next morning, there was almost enough in the Paypal account to cover the rent. We would be okay.

 

Saturday we went out to a horse ranch where Jani rode and I pulled weeds (I trade labor for the horse therapy because we can’t pay). Jani did well. When she is around animals, I know she is okay. I happily dug up dock sorrel, whose roots run deep into the hard clay soil, and which is also poisonous to horses if consumed in large quantities.

 

Saturday was a good day.

 

Jani had no school on Thursday or Friday. Thursday was Veteran’s Day and Friday was a district furlough day. Weekends are hard enough. Jani needs a fixed schedule. She needs to know what she will be doing every day, and it needs to be the same thing (totally unlike when she was a toddler and it always needed to be “new”).  The first thing she asks me everyday she wakes up is “What are we going to do today?” and then I see her watching me, waiting, while I desperately try to think of something.

 

Jani reacts badly to any change in her routine. She has two teachers. One who teaches Mondays and Thursdays and the other who teaches Tuesdays, Wednesdays, and Fridays. But this IEP season and both are special ed teachers. Since Jani goes to school in the afternoon, after all the other kids are gone, this means that her schooling often falls during district meetings or IEPs. In an attempt to maintain the continuity of her experience, her teachers will trade days when one has an IEP and can’t make it that day. Jani doesn’t melt down at this, not like I have seen autistic kids do. At first, she is fine. She goes along with the changes, even happily telling me who will be her teacher that day. But she is rubbing her hands furiously. It is like the fuse has been lit on the end of a stick of dynamite.

 

When I pick her up, she will say “I had fun,” at school, without prompting, which usually means she is trying to convince herself of that. The hand rubbing again.”What are we going to have for dinner?” Ah…. I haven’t thought that far ahead. Jani waits, then answers the question for herself. “I want rice and corn tonight.” Okay.

 

We will get home and start making dinner. Jani will help me prepare the food. But waiting while it cooks is hard for her. She paces. She picks up a large spoon and stirs the rice, watching it for any signs that it is ready. I watch her carefully because she will eat it raw. She gets out the butter for the bread we are heating up. She cuts off butter in preparation with a plastic knife. She waits expectantly, watching the microwave tick down. I look away. When I look back, she is eating the butter. Just butter. I tell her not to. I send her out of the kitchen. She wanders. Bodhi runs in from his bath, naked as a jaybird. He runs up to Jani, grabbing her, laughing, wanting to wrestle. She pushes him away. That is new, I think. She hasn’t done that for awhile. Bodhi tries again. He wants to play. Jani pushes him again, “No, Bodhi!”

 

“Susan?” I call, getting nervous. “Can you come get Bodhi?”

 

“Hold on a minute. I am in the bathroom,” Susan calls back, annoyed.

 

“But I’m making dinner.”

 

“I’m in the bathroom!” Susan calls again, as if I was too dense to hear it the first time.

 

I take Bodhi and diaper him and dress him in his Pjs. Jani walks past us into the kitchen again. She picks up the spoon and stirs the rice. “Is the rice ready?”

 

It hasn’t even started to boil.

 

“Not yet.”

 

“How long?”

 

“I don’t know.”

 

“How many minutes? Five? Ten?”

 

She wants an exact number. “Ten.”

 

Out of the corner of my eye, I see her stir again. “Jani, leave it alone. Let it cook.” She is eating the uncooked rice, lifting the spoon with near boiling water to her mouth.

 

“Jani, don’t do that!”

 

Were you afraid she burned herself? No, not yet. Sometimes though, I wonder how I would stop her if Jani suddenly got a thought into her head to pour the boiling water all over herself. In those moments, her brain is the most dangerous thing to her. Her brain can send a message and she will act.

 

She needs something to do. There is no down time. “Here, help me make the salad.”

 

Keep her busy, keep her busy, keep her busy.

 

Saturday. I hate the weekends because there is no school, even though Jani’s school is only two hours a day. At least she has that to look forward. On Saturday, we go out to the ranch, but that isn’t until the afternoon. We have to find some way to get through the morning.

 

We go to breakfast. Jani wants McDonald’s. I drop Susan off at Western Bagel to get our breakfast and then drive across the parking lot to the McDonald’s. Susan will walk over. I take Jani and Bodhi in. Jani wants French Fries but they are still serving breakfast. She agrees to hash browns and a yogurt parfait. She insists on carrying the tray to the table. She drops the orange juice. She starts to lose it but I assure her we can get more. I ask for another and am given one. Susan arrives with the bagels and we eat breakfast. Jani takes a few bites of her hash brown and a few bites of the yogurt, then says she is full. Then she says she is still hungry. McDonald’s has rolled over to lunch. I get a large French fries. She eats a few. Bodhi reaches for them but she pushes him away. We tell her to share. She insists he will eat them all. There are plenty we say. But suddenly she doesn’t want to eat anymore, as if us making her share with Bodhi killed her appetite. She says she is full. She gets up, ready to go. Where can we go, she asks? I don’t know. Can we go to Central Park, she asks? Sure. Let us just finish eating. She hovers around the table, unable to stop moving. This is with fifty milligrams of thorazine in her, plus 300 mg of Lithium and 100 mg of Clozapine. I ask her if she wants anymore fries. She doesn’t. I pack up the remainder. She takes them, intending to carry them, but drops them, spilling about half on the floor. I tell  her no big deal, we can get more, even though she wasn’t even eating them anymore. She picks up the box and throws it across the restaurant, fries flying out and hitting a young woman eating, who looks at me and glares. I ignore this. Jani starts crying, saying she needs more fries. She says she will never get anymore. I hold her arms because she is trying to throw anything she can get her hands on. Susan is going to get more fries. Jani drops to the floor and starts eating fries off the floor. I take her arms and try to get her back on her feet. She cranes over, her arms held by me, trying to get the fries on the floor with her mouth. It looks like she is bobbing for fries. I tell her more are coming. She is inconsolable, insisting that there are no more. It is like she can’t here me. Susan arrives with fresh fries. Jani doesn’t eat them. She doesn’t want them. She wants what is on the floor. Something is driving her to eat off the floor.

 

I get her outside.

 

Sunday. The day Susan and I do our Bipolar Nation radio show. We travel first to a friend to drop Bodhi off. Jani wants to see their cat, Vinny. Vinny is dead, but we have been telling her he is at the vet. He is fifteen after all. In reality, he was hit by a car. We don’t want to tell Jani the truth, not when she is already struggling.

 

In order to do Bipolar Nation, a fifty minute show, the only time Susan and I get alone a week, we must drop Bodhi off with a friend and then drop Jani off with a UCLA intern who helps us out. We do not allow anyone to take both kids together. It is too risky. Each child must go to a different location so the person watching each one has only that child to worry about.

 

Usually, Jani’s intern takes her to ride the ponies in Griffith Park. Jani didn’t want to go this time. She wanted to stay with us. She wanted to come into the studio. This wasn’t feasible. Jani can’t sit still for a few minutes, let alone fifty. On top of which we had topics we did not want to discuss in front of her because it would be inappropriate. Jason Garrett, one of our resident comedians, was coming on that morning. I asked Susan to call him and ask if he could bring his dog, a service animal he uses as part of treatment for his own bipolar disorder. He said he could. I thought fantastic. Jani and her intern will stay in the waiting room, playing with the dog.

 

 

We arrive outside the studio. Jani jumps out of the car, wanting to see the dog. The dog isn’t here yet, I tell her. The dog might not be here for thirty more minutes. Are you sure you don’t want to go ride the ponies? No. In reality, I want her to go, knowing that once she is focused on something else, she will forget about the dog and staying in the studio.

 

Jani keeps looking for the dog, even though I tell her Jason isn’t here yet. She is moving up and down the sidewalk along Ventura Boulevard. Then she steps out into the street, between our car and her intern’s parked car. MTA buses blast by. Nervous, I try to guide her back onto the sidewalk. She resists. She is trying to get out into the street, where cars race by at 50 mph. I put my body between her and the street. She pushes back against me. She tries to get around me. I have to grab her arms. She is pulling. I don’t know if she is trying to get out into the street, or if she is even aware that the street is there, but that is direction she is trying to go. I am trying to hold her back. If I let go, she will run forward and be run over by heavy traffic. I try to get her to go upstairs. She won’t until the dog arrives. I hold onto her. We feel the slipstream of cars rushing past. Jani seems oblivious. She is just trying to get free, but she is pulling for the street.

 

Jason arrives with his dog, Lola. Jani turns away from Ventura Boulevard, away from me, and runs up to Lola. I relax, thinking everything will be alright now.

 

But I didn’t know that Jason never lets his dog out of his sight. I didn’t know he wouldn’t leave her in the waiting room with Jani, that he would insist on bringing her into the studio. This mean Jani insisted on being in the studio too. She still doesn’t want to go to the ponies. She wants to go on the air.

 

This is the link to the show itself. Jani keeps repeating that she has schizophrenia and the word “dog.” We have a guest on, talking about how ValueOptions, who administers mental health benefits for Medicaid patients in Colorado (and most states), refused to give his nine year old son a psych evaluation, deeming it “medically unnecessary.” Later that same day, at his school, the boy is found sharpening a stick, intending to kill himself with it. The police are called, the same police department that responded to Columbine eleven years ago. Men with guns. The boy bites one of them as they try to talk him out of trying to kill himself.

 

This is a nine year old boy.

 

ValueOptions’ bread and butter is state contracts to administer mental health benefits. The “value” they promise is gained by denying every claim they possibly can, which is essentially all of them. They save states like Colorado a lot of money by denying payment for mental health treatment, although in the end the state ends up paying more because these kids wind up in residential treatment facilities (which ValueOptions does not pay for) or jail. States like Colorado choose them because of their low cost, not realizing that they are going to end up footing the bill because ValueOptions denies authorization for inpatient acute care. It is sort of like having a pimple on your face but instead of treating the pimple, cutting off your face.

 

Throughout the show, Jason is silent. This is because is working to keep Jani engaged, as is her intern, Julian. Eventually, even Susan is called upon to try and help, leaving me to carry the show. I am talking to our guest while three adults try to get Jani out of the studio. You can’t hear most of this because I kill everybody’s mic except mine. We go to commercial break, and I run every commercial and bumper we have, even inadvertently repeating the same commercial twice, for my father-in-law’s time management book. We have to get Jani out for a few minutes because our next topic is Jenna Jamison turning from porn to being a mom, which we cannot talk about with Jani in studio. Susan hurries back as the promos end and says, “We’re a bit bipolar today,” out of breath. Five minutes later, we end the show. We come out to find Jani on the floor. The items that should be on the table in the waiting room are piled up on a desk inside the studio area. Jani had been throwing them. I find out she threw a glass vase at Julian.

 

The fuse reached the stick of dynamite. Jani was out of control.

 

It was Susan who made the decision to take her back to UCLA. I was hesitant. Actually I was indecisive. If I had been with her, none of this would have happened. I should have been there. I should have blown off the show. I didn’t because I am trying to help others with mentally ill children. But it is coming at the cost of my own.

 

Susan insisted she go back to UCLA. I still was indecisive. Susan reminded me she had tried to run into Ventura Boulevard.

 

I never know how far is too far. I never know when to take Jani back to UCLA or when to ride it out. My instinct is to ride it out, but what if I ride it out until it’s too late. What if I dismiss the violence, her biting herself and sticking foreign objects in her ears because they are itchy, or running into traffic? What if I go back to engaging her and everything is fine? And then she pours boiling water over herself one night while we are making dinner?

 

How long should I wait?

 

Thankfully, Susan made the decision for me. She took her. I picked up Bodhi, packed Jani a bag of clothes, some of her favorite books, and her favorite teddy bear. Then I drove to the UCLA ER and traded Bodhi for Jani. Susan left and I stayed with Jani, not sure they would admit her. She was largely fine while we waited. No violence, no trying to run. We were in the psych hold rooms in the ER, where I have been so many times before the security guards all know us. Another patient serenaded us to the greatest hits of Bob Marley. It was actually one of my more pleasant experiences in the ER.

 

The on call psychiatric fellow came, a nice young lady. She asked me what was going on. I told her, but I had trouble. I was caught between my indecision of whether she needed to be hospitalized. I know it is better to hospitalize than wait for something bad to happen, but what can UCLA do? There are no more meds left to try and I don’t want to put Jani through another med trial anyway. I just wanted her safe. I just wanted her to get what I felt she needed, which was a place to decompress from the stress of our world, your world, the world the rest of us live and deal with but a world that slowly eats away at Jani’s resistance against the citizens of Calalini. She needed a break.

 

To my surprise she was admitted. On the grounds that “parents felt child would not be safe at home.” Maybe. I don’t know. I have no trouble outing people who deny care or give poor care to mentally ill children on the radio, but I am indecisive when it comes to my own daughter. Am I doing the right thing? Always on these nights I intently wish I could just take her home to her own bed, even as I check her into the hospital.

 

She started crying inconsolably. Because they were taking too long to come get her and take her upstairs. They would never come, she felt.

 

When we got upstairs, she cried because she didn’t want me to leave.

 

What does she want? I don’t know that she knows. Her emotions are ping-ponging back and forth. Maybe that’s a good thing. At least she has emotions. There was a time when she never cried when we left the hospital. Now she does. Now she is in touch with her emotions enough to miss us.

 

Is she psychotic? She was. Is she now? I don’t know. I think she was anxious. The fuse ran out .

 

I was deep in doubt, that is until I read two comments from my last blog. I don’t think either one was familiar with our story. One suggested that I needed to get a higher paying job, or that Susan needed to work full-time, apparently assuming our inability to pay the rent on Jani’s apartment was due to an inability to make money, but clearly forgetting why we have two apartments in the first place. We can’t make money, but not because I can’t get a higher paying job. My inability to make more money has a name, and her name is Jani. She needs me. If I could be there all the time, if I had her energy, if had endless ideas for stimulating her, she would be fine.

 

The second commenter suggested it was “time to make the hard decisions,” whatever that means. Actually, I know what it means. Sacrifice Jani to a residential so I can work more and stop begging people I don’t know for money.

 

No.

 

I am a Capricorn, the stubborn goat. I will, and do, say in my blogs over and over again how I am not sure that we can do this. I doubt myself all the time. But if you say it, I say, “screw you.”  If you doubt me, then I become convinced I am doing the right thing.

 

So please, write to me and tell me I should not have let Jani go to the hospital. Tell me I am wrong, that everything I am doing is wrong, that I can’t possibly keep this up, that eventually I will have to make a choice between Jani and my own sanity.

 

Do me that favor. Tell me I can’t do it.

 

Please.

 

Because I need to feel like I can.

 

[video:

100×100]

Ready for the Floor (Take this Dance)

I knew this would come eventually. Frankly, I am amazed how long we have been able to delay it.

 

In April of 2009, Jani was at UCLA. She had been there three months already, a lifetime in modern American inpatient psychiatric care because of insurance companies always pushing for release. The standard initial authorization for acute inpatient care for psychiatric illness is three days. Every day after that new authorization must be sought. It is such a fight for hospitals that they often release patients and tell them to come back again through the ER, because doing so constitutes a new stay and the three day clock created by the insurance resets.

 

Where did this three day rule come from? If a patient is diagnosed with cancer, they are not given three days to battle it, to keep it from spreading through the body. They are given as many rounds of chemo and radiation as is needed. It is like coming in with breast cancer and being told that you will receive three days of chemo and that is it. That would never happen.

 

Yet it happens to psychiatric patients all the time. Why? Because as a society we still treat mental illness like “it is all in your head.” You just need to “snap out of it.”

 

Rapid response to medications is rare and almost certainly will not occur within three days. You also have to monitor carefully for side-effects.

 

It has gotten to the point in America where doctors really can’t treat patients anymore. They minimize treatment to insure they get paid by the insurance carrier, who rewards them for utilizing the cheapest care possible. Inpatient psychiatrists spend a sizable chunk of their days on the phone to insurance carriers, arguing with the “doctors” who work for the insurance carrier, whose sole job it is to argue that tests, treatments, inpatient stays, etc, are “medically unnecessary.” On the other side, they have the hospital administrators pushing them to release patients for fear that the insurance carrier will deny payment and they will be left holding the bill.

 

So hospital doctors are caught between the insurers and the administrators, neither of whom have the patients’ best interests at heart. Occasionally, rarely, doctors will stand up and hold their ground, insisting that a patient must remain inpatient. Sometimes they forfeit their payment and the payment to the hospital. UCLA ate several weeks of care for Jani after Blue Shield denied authorization for further care before I appealed to the State Department of Managed Care (California has the best consumer protections against insurance companies in the country) and they overturned Blue Shield’s denial and forced them to pay.

 

I wish that doctors and parents wouldn’t fight. I wish they all realized that they are the defenders their mentally ill children have.

 

But I digress. Maybe because I am tired of fighting.

 

In April of 2009, Jani was at UCLA. Despite all attempts to check its progress through various medications, Jani’s schizophrenia was winning. There was the violence, but that wasn’t the worst part. The worst part came a night I came to visit her.

 

I have blogged about this before but it bears repeating.

 

She was asleep when I got there for visiting hours. I woke her up. I had food for her, but that wasn’t why I woke her up. I needed to see her. I needed to know that there was still a little bit of Jani there. In those months in the Spring of 2009, that was all I had to hang on to, those little moments that let me know that there was still some of my daughter left inside, still some of my little girl.

 

I call to her, “Jani, it’s Daddy.”

 

She opens her eyes and sits up in her bed. She looks at me, but then scans the room. She didn’t appear to be looking for anything. It was like she was rechecking her surroundings, trying to get her bearings.

 

Finally, she turns back to me. “Who are you?”

 

At first I thought she was joking. Jani and I say silly things to each other all the time. It has always been our bond and my way into her world. I kept waiting for a smile to break out on her face.

 

But it never came. She just kept staring at me.

 

At that was when I realized she truly didn’t know who I was.

 

“I’m….I’m your daddy.” I choked out the words. I am the man who has raised you since you were an infant. I was the man who tried to show you the world, who tried to delay what I knew was coming, even if I didn’t have a name for it then.

 

“Oh.” Her voice is flat. She is taking my word for it. “Did you bring me any food?”

 

I lay on the bed next to her while she ate. She let me hold her, but I could tell she took no comfort from it. It meant nothing to her, one way or another. I meant nothing.

 

She was almost entirely gone.

 

I drove home that night, convinced we were nearing the end. I was afraid Jani was slipping into catatonic schizophrenia, that her world would soon completely eclipse our own.

 

One day, I thought, very soon, she will go to sleep and never wake up. Her body will go on but her mind will be gone.

 

I could not stop it. UCLA had tried to stop it but to that point had failed. And I wasn’t going to let her slip away in a hospital. If she was going to go, I would be with her when she left, even if she had no idea I was there.

 

I called Susan. “I think this is the end,” I told her, relating what had happened.

 

Susan was crying.

 

“I want to bring her home, and just let whatever is going to happen, happen. But I can’t bring her home with Bodhi there. You need to take Bodhi and go to your parents.”

 

“But I want to be with my daughter!” she cried.

 

“I don’t want him to see this.” I don’t want him to watch his sister slip away into a place she would never come back from.  I also knew from listening to others in the support group we attended at the time that at some point Jani might receive a command to kill me, that it might be my voice in her head. I have heard it happen to other parents. In truth, I wanted this. If Jani was going to die, I wanted to die as well.

 

This is what I didn’t want Bodhi to see.

 

Susan was distraught.

 

“I need my daughter! I want to be with her! She needs me! And Bodhi needs his father!”

 

There was no other way. I hung up and stared into the night, mentally trying to prepare myself for the end. No matter how much it hurt me, I would be there until the end.

 

And when she was gone, I would take something, lie down next to her, and slip away, too, hoping we would meet again in the next world.

 

Bodhi would be okay, I told myself. Bodhi needed his mother more than he needed me. I had to go with Jani. I had brought her into this world. My genes had cursed her to this fate. I had to go down with her ship. I owed it to her. It was the only way I could say I was sorry.

 

My cell phone rings on the passenger seat beside me. It is Susan. I pick it up.

 

“I have an idea,” she says. “It just popped into my head. It must be from God.”

 

I was pretty short on faith right then. I wasn’t angry at God for any of this. I didn’t blame God. It was just the hand that fate had dealt us. But I certainly wasn’t expecting God to save Jani. Or us.

 

“What if we trade in our two bedroom apartment on two one bedroom apartments?”

 

It took me a minute to comprehend what she was saying.

 

“One for Bodhi and one for Jani,” she went on. “That way you and I could trade off and each child would still have both parents.”

 

I have come to believe God really does speak to Susan. Not in the “Hello, Susan, this is God,” way, but I do believe her inspiration is divine. It has to be. It was a brilliant idea.

 

The next day I checked with the leasing office. Two one bedrooms were coming available. We could roll over our lease into the two new apartments.

 

We moved in May of 2009. The collective rent for both was 2500, five hundred more than what I was paying for the two bedroom.

 

This is what allowed us to stay together as a family. This was the only option other than sending Jani to an out of state residential, the only thing the Department of Mental Health could offer, because the only local facilities that took a girl Jani’s age had rejected her as being “too staff-intensive,” code for too psychotic. Because these in state facilities are really orphanages for DCFS kids removed from their parents’ care, not residential treatment facilities. The care is geared to dealing with trauma from abuse, not internal thought disorders and psychosis.

 

Jani’s apartment was her refuge, her place to go where she didn’t have to worry about hurting Bodhi. And Bodhi had his place so he would not grow up in fear of his sister. We wanted him to love her, to understand her, so he would care for her when we were gone, not fear her and hate her because of her sudden and unpredictable violence toward him.

 

I said at the time, and continued to say for many months after, even as I started admitting to financial struggles in this blog, that originally I had been able to afford both apartments. That was a lie. It was always a lie. I knew I couldn’t afford it. Even with a full load of classes, which I could no longer do due to Jani’s constant needs, the rent on both apartments ate up everything I made. I knew that eventually the day would come when I couldn’t do it anymore.

 

Susan’s unemployment delayed it for awhile. The first part of my book advance delayed it for awhile. Cashing out my retirement account delayed it for awhile.

 

But mostly, it was these people:

 

Elizabeth Hawksworth

Wendy K Warbasse            

Erin Whittaker            

emily martz

Jim Kelley

My H Doan Katherine Welch            

Rhea Cicale            

Catherine Flood            

Alecia Kyler

Charles Olbert

Michelle Wilson

Jennifer Keane

Carl Goss

Michele Walker

Nabhan Khondker

Ainara Del Valle Perez-Solero

Joseph Coti

Jennifer Boyd

Erika Christensen

Alynna Manriquez            

Tom Kegerreis            

Alexandra Drown            

Amelia Davis

Lynn Frake            

Will Landa            

Ariel Braverman

Margo Martin            

Synthia Jahns            

Katherine Walters

Tony Herman

Christine Lang

Victoria Gronek

Julie Nagy

Laurie Zuckerman

Andrea Nostramo

Shelley Marshall

Erich Burg

Tara Berchielli

william hasemann

 Angie Geisler            

Sarah Hodge

Donna Segel

Antona Software

Cristin McCloud

Joanna Sidlinger

 

These are just some of the people who have helped us out financially.  I wish I could list everybody. This list of names goes back to August 2010, which was as far as I could get before the Paypal transaction record crapped out on me and wouldn’t show me any more.

 

 

All but one of the people above I have never met. They only know me through here. As I said, this is only the list going back through August, and many of the names on here gave more than once. All together, probably five hundred people have donated to us since the Paypal first opened here in September of 2009. Some have donated four figures. Some have donated one. Whatever the amount, these are the people who have kept my family together. These people have allowed me to keep paying for the two apartments. They have done so through my denials to myself. I would make references to not having enough money in many of my blogs but could never bring myself to ask outright. I was kidding myself, pretending that by not asking outright I wasn’t begging, that I was simply accepting the graciousness of these people who have never met me or my family.

 

For a year and a half, I have depended on the charity of others to keep the two apartments and to keep my family together, but I always knew that it was only a matter of time. Even with all the giving, we are a black hole, paying out in rent and life expenses twice what I make as a lecturer. It was only a matter of time.

 

Time is up.

 

Tonight, as I brought Jani back to her apartment after dinner, I found a sheaf of paper stuck in the door. It was a legal summons. Our apartment complex is suing Susan and I for unlawful detainer as we have, once again, been late with the rent. Every month has become a decision. Which apartment do I pay? Jani’s or Bodhi’s. I can only pay one. And then I wait, pray, write another blog where I make references to not having enough money, praying that we will get donations so I can keep this up another month.

 

This month I paid Bodhi’s apartment but could not pay Jani’s. In previous months, the managers have waited. This time she sent us to legal.

 

I have five days to respond to this legal request for eviction. I have already talked a lawyer friend. I have no recourse. This is a well-managed apartment complex. They fix things quickly. There is nothing I can counter-sue for. I have no justification for not paying the rent. The fact that I need two apartments because my daughter is schizophrenic and this is the only way to keep her out of residential and ensure a healthy relationship with her brother entitles me to nothing.  Nor does any of the media appearances we have made. They don’t care.  I need to come up with $1250 plus their legal fees by this Wednesday the 17th. If I can’t, I have to hope I can get a stay. I have tried to negotiate a lower rent but to no avail. I am not special. Jani is not special. They acknowledge her illness but that doesn’t excuse me from paying the same rent everybody else does.

 

And, sadly, they are right. I have desperately tried to remake the world to fit Jani, but I have run out of time. In the end, I, she, we, are no more special than anyone else. The only difference between you and me is we’ve been on Oprah.

 

I cannot move Jani. She has been out of the hospital for five months now, her longest stretch since January 2009. But as I mentioned in my last blog, this is the hardest time of the year. She does not deal well with even minor changes. I am terrified that changing her environment would send her over the edge.

 

Even if we could all fit into Bodhi’s apartment, the lease stipulates only three people can live there.

 

I will not send Jani to residential, just to save money. I will nakedly beg all of you for money, over and over again to prevent that from happening. I don’t care what anybody thinks of me or says about me. A year and a half ago I thought my daughter was going to slip away forever. I will never let that happen. Whereever she goes, I go with her.

 

So here I am. I have no pretense anymore. I am begging you. Tell your friends and coworkers about us. I am begging them, too.

 

I wish I could say I only have to do this once, but that would be a lie. I will be back to beg you again in December. I will have to keep begging you until the book is published (in 2012, assuming I can finish it on time). So many of the people above, and the ones I couldn’t get onto the list, most of them couldn’t afford it. That pains me. It makes me wonder where the rich foundations are, the ones who have money? Or is keeping a family together not worthy of their investment?

 

The only way I can stop begging is if there someone out there with enough money to donate to keep us going for six months or so. That would mean many thousands of dollars. I hope, but I don’t expect that. In truth, I know it is going to be all of you who can’t afford it but will give anyway.

 

I thank you from the bottom of my heart. All of you. You have allowed us to do what most other families couldn’t do. You have kept our family together, kept our daughter with us, allowed our daughter and son to develop a relationship, kept our daughter’s life as stable as possible. I owe all of you in ways I can never repay. All I can say is that if we survive this attempt at eviction, and the one after that, and the one after that, I will spend the rest of my life making sure no other family with a mentally ill/autistic child has to beg to stay together, beg for help. And I already am.

 

I am ready for whatever happens.

 

I love and thank you all.

 

[video:

100×100]

Come On, Thunder (Look, I gotta go. I'm running out of change)

[video:

100×100]

 

At some point in my life, I don’t remember when, I waded out into the ocean. Maybe it was during one of our vacations to Hawaii when I was kid. It must have been, because there was a reef out in the distance. It looked a mile away, but to a child everything looks bigger than it really is. You just don’t realize it until you are an adult.

 

Waves crash over reefs much differently than they do on the beach. By the time the wave reaches the beach, it has lost most of its energy as the force of the wave is pushed up along the sand. When you walk along a beach, the waves die at your feet, giving up the last of their energy before falling back into the ocean, the water pushing up on the waves coming in above, repeating the cycle, endlessly, until the oceans run dry. The life of a wave is measured in billions of years. They will live until the world ends.

 

Beyond the reef, the waves are small, creations of wind and currents. Inside the reef, they are quiet, flat, peaceful, like a bullet casing dropped from a gun after the projectile is long gone.

 

But at the reef is the collision of heaven and hell. The waves coming over the reef, pick up power and strength, the full force of the open ocean squeezed across the narrow space between the coral and the surface. It is a violent reaction.

 

I remember walking out into the lagoon. The water was shallow, inviting me to walk. When the water reached my chest, I turned around and the shore seemed so far away, so far I could only see it during the dips in the waves. I was alone. I felt alone. At first there was the instinct to turn back, but I didn’t. I turned back to look at the reef ahead of me. It seemed to so close. For some reason, it felt like it would be an accomplishment to reach it. I needed to reach it, as if reaching the open ocean meant touching every point in the world. So I kept going.

 

The breakers coming over the reef seemed small, broken apart and melting through the coral that occasionally appeared out of the water. My feet left the sand. I was treading water now, so close.

 

And then I saw it.

 

This wave, I knew instantly, would not batter itself out upon the coral. This wave was large enough to cross the reef unimpeded.

 

I kept waiting for it to get smaller, but it wasn’t. It seemed to be getting faster, bigger. I could see the water sliding up the wall, the “pipeline” as surfers call it.

 

I had nowhere to go. I would never make it back to shallow water, where I could put my feet down, in time. I could not turn left. I could not turn right. Either way I could not outrun it.

 

I knew it was going to break right over the top of me.

 

And then I felt coral under my feet. I had been sucked into the edge of the reef as the wave pulled water toward it. I could not dive under now. If I dived under, the wave would pound me into the coral, which would cut me.

 

There was nothing to do. But even when there is nothing to do, there is still a choice. There is always a choice. I could have started back, swimming as hard as I could for shore.

 

But I had no fight left in me. It was hard enough just keeping my head above water.

 

There comes a point in every person’s life when your options are down to two: fight vainly or let the wave hit you.

 

Suddenly, I felt a sense of clarity. I knew what I was going to do. I was going to let the wave hit me. It was inevitable. Whatever would happen, would happen. I felt ready. I felt at peace. I turned to face the wave.

 

The wave is coming again.

 

Things have begun to slip again, as they must always do. Schizophrenia is like the waves. It will go on, crashing into the reef of medications and therapies, which provide the shelter from its ferocity, weaken to the point of seeming to die at our feet, before it rolls out again.

 

The rolling out is always the scariest part. I hate feeling the water sucked back out between my toes, running back out, because I know what it is coming. They say that before a tsunami the water at the shore is drawn away. It exposes everything, everything that is normally covered. For a few moments, the seabed is naked. Every fault you had is on full display. But the wave is coming back.

 

I saw the wave coming several weeks ago, but waves are deceptively small when viewed from shore.

 

First, the light was growing dim and the leaves were falling dead from the trees. Autumn. It was the sign that we were entering the most difficult time of the year for Jani. Every year since Jani’s illness became acute we had dealt with this but every fall I still find myself hoping that this year will be different. I hate autumn because it is the longest time to spring. It is beginning of the our passage as a family behind the dark side of the moon.

 

Seasonal Affective Disorder, as it is known, is common even among those who don’t have a mental illness. It is caused by the declining amount of daylight, and more importantly, the weakening of UV light as the hemisphere tilts away from the sun.  SAD, a very appropriate acronym, causes feelings of depression and apathy. We want to sleep more, to hibernate.

 

But for October, so far, so good. Jani was doing well with her two hours of school per day: her hour of occupational therapy and her hour of academic learning with a teacher. She was doing well.

 

I was (and still am) teaching three courses at CSUN, three courses I had never taught before. I have not done well. I have no trouble talking in front of a class. But I didn’t prepare well enough, because I had no time to prepare in the summer. Because of Jani, I could not go the composition orientation, so I didn’t learn what I needed to do for this class. I winged it, only to discover more than halfway through that I was not preparing the students for their final portfolio. For the first time in my teaching career, I could not manage to learn my students’ names. They began to look the same to me. I would give assignments I hadn’t thought out very well, because I have no time to think, and then have to change them halfway through. I was struggling far more than I did last spring, when I returned from taking family leave in Fall 2009. For the first time, I was shortchanging my students, giving them either poor feedback or no feedback at all.

 

I hate the end of the month, because it means that the new month is just around the corner. I hate the first of the month because it is the day that rent is due, and so often I don’t have it. I have it for one apartment (I make enough to pay for one) but not for the other. In October I was able to pay both on time because I cashed out my retirement account. But I knew that I had nothing left to cash in for November. Bodhi’s preschool costs $200 a week, which we are late on too. He has to go to preschool, so Susan only has Jani in the morning when I go to teach. He also needs it for himself. His speech has taken huge leaps. He is much more verbal now, asking for things with words. He is interacting with other kids. He is socializing. He is getting the learning that I taught Jani when she was his age but now cannot teach him. I don’t have the energy left.

 

But with Bodhi in preschool in the morning (Jani goes to school in the afternoon because her teachers teach their regular classes in the morning) we were making it.

 

Two weeks ago, Jani developed diarrhea. Susan called me at CSUN to tell me. Jani was distraught because she had messed herself. She wanted to take Jani to the doctor. It had only been one day, so I wasn’t worried. It was probably just a stomach bug. Still, I rushed home from work, blowing off my office hour, because Jani needed me. She was crying for me. When I got to her apartment, she was bundled up on the couch, crying that she needed the doctor. The doctor’s appointment was still two hours away. I felt it would be a waste of time anyway. The family practice doctor would just tell us to keep her hydrated. Susan wanted to take her to the ER, but that would take longer than waiting for the family doctor’s appointment and besides, they wouldn’t treat diarrhea as an emergency.

 

Whenever Jani gets sick, it can trigger her psychosis. She doesn’t know how to deal with it. It is new. And anything new, any deviation from her normal schedule, opens the door to the psychosis.

 

After a few minutes, Jani wanted to go out again. All the crying stopped. “I can’t stay home,” she yelled. Her apartment is filled with toys she never plays with. She needs directed activities all the time. She cannot self-stimulate.

 

This didn’t mean she wasn’t sick, though. Jani is not that in touch with her body. So she will go even when she is sick. This is dangerous because it means we usually don’t know when she is sick. Once, when she was four, she suddenly collapsed in a Target and said she couldn’t walk anymore. It turned out she was running a 103 degree fever. She can look well, but be very sick and we have no idea because she doesn’t slow down.

 

We went to the doctor, who gave us a stool sample kit and told us to give her Immodium. I was actually so broke I couldn’t even buy the Immodium. It didn’t matter anyway. She had no diarrhea with me.

 

There was none through the weekend.

 

I thought it was over.

 

Then it happened again on Monday morning. Susan and Jani have started coming with me to campus on Mondays. Jani feeds the squirrels or they go to the mall while I teach. Again I get a call that Jani has had diarrhea. I can hear her crying and screaming in the background. Again, I have to leave campus early.

 

We go home and clean her up. She has no diarrhea. In fact, I have yet to experience it. It is only happening when she is with Susan.

 

Later in the day, I drop her off at her occupational therapy, bringing a change of clothes (just in case). The staff were concerned about letting Jani play on the equipment, somewhat understandably, because they had just cleaned all the balls in the ballpit after another child had an accident. I could tell they weren’t comfortable with me bringing her with diarrhea, but I told them she hadn’t had it since this morning. But the truth was she needed her schedule. And I needed to get back to campus. I had my Monday afternoon class to teach and I had a Chinese student waiting for me who can barely comprehend English and whom I am trying to help pass when what she needs is an ESL course (which CSUN doesn’t have) and I have no training in ESL. They didn’t want me to go. But goddamn it I have Jani all the time. They only have her for an hour a day.

 

I am almost back to campus when Susan calls me to say that Jani had diarrhea again. She is taking Bodhi and going to pick her up. I feel paralyzed. Should I go home? Susan wants me to come home. But this class only meets once per week and I need to teach it. I can’t cancel it. I call the doctor, trying to get the results of the stool sample, but am told she is with a patient and will call me back. I call Jani’s psychiatrist. Same thing. I am about to turn around and come home when Susan calls me to tell me that a friend is coming over. She will buy Immodium. We still have no money to even pay ten bucks for a bottle of Immodium.

 

The next day I don’t teach and I am with Jani all day. No diarrhea. On Wednesday I have to teach again. Again she has diarrhea in the morning, but not in the afternoon when I am around.

 

On Thursday, Susan takes Jani. It is my day to write my book. I have just gotten back from the dog park with Honey when Susan calls to say Jani has diarrhea again. They are going to see Jani’s psychiatrist. Jani has her weekly appointment on Thursdays but it isn’t for another hour. Susan calls me again to say Jani has diarrhea in the waiting room. I want them to wait for Jani’s psychiatrist but Susan is fed up with no one taking this seriously. She is going to take Jani to the ER at UCLA. Susan doesn’t know if this is the medications.

 

I look up Jani’s meds.

 

Clozaril: more likely to cause constipation

Thorazine: can cause constipation

Lithium: Diarrhea can be a sign of lithium toxicity

 

Oh shit.

 

I start packing a bag for her, including her favorite stuffed bear, Hero. We don’t know if she is going to be admitted. She is not psychotic enough to be admitted, although the warning signs are there. She complains of her ears being itchy all the time. One day while driving I catch her trying to shove a straw in her ear. When I take it away, she tries again with a lollypop stick. I take that away too and warn her she could puncture her eardrum. Her only response is “my ears are itchy.”

 

She also started saying that she hated school, that they were putting too much pressure on her. So I went and observed. They weren’t.

 

But Jani isn’t doing the things that used to get her admitted, like lying down in the street or talking about jumping off buildings or attacking Bodhi.

 

I pick up Bodhi and drive to meet Susan and Jani in the ER, cursing myself for not taking this seriously. It is so easy to forget that these meds are powerful stuff, because she functions on them, running around without a problem. What if the lithium has damaged her? I read that lithium is not supposed to be used for more than 3-5 years because of risks. She hasn’t been on it that long, but what if…. And if it needs to be pulled, what then? It works.

 

I call her pediatrician and ask her if she is aware that diarrhea can be a sign of lithium toxicity. She was not. Big surprise. Pediatricians and family practice doctors know nothing about psychotropic drugs. They treat Jani like they would treat any other kid, forgetting that Jani is on enough meds to put an adult into a coma, just so she can function. Pediatricians are so used to the normal childhood illnesses that they don’t react when Jani comes in with diarrhea. Just give her Pedialyte. That’s what we tell parents. Except that their kids aren’t on potentially lethal doses of medications. They look at her and see an active little girl. She can’t be sick. She is still running around. But she has always been like that. And yes she can be sick. She could be dying and we wouldn’t know it.

 

We have never found a pediatrician or family practice doctor we have been happy with. Every one of them just stares blankly at us when we give them the list of Jani’s meds.

 

I reach the ER and trade with Susan, her taking Bodhi and me staying with Jani. Hours pass. An eighty year old man entertains Jani by singing Vaudeville songs while his wife undergoes an X-ray. The ER doctor tells me she is concerned about diabetes insipidus. What is that? Apparently, it can be caused by lithium. The kidneys stop processing glucose out of the body, turning urine into pretty much just water. The only treatment is reduction of the lithium or reduction of fluids, which seems counterintuitive but that is what they do (so the glucose can build up in the urine).

 

The ER doc calls Jani’s psychiatrist. She comes back telling me Jani’s psychiatrist doesn’t want to reduce the lithium. I don’t like this. The only thing that she really needs is the thorazine. That is what works the best against her psychosis. But without the lithium and the clozaril, she would need a higher dose of thorazine which can cause extreme photosensitivity and even toxicity in its own right.

 

Anybody who thinks I like giving Jani these drugs has never been in this position. Without them, Jani tries to bite her own hand and runs under cars. With them, her organs are at risk.

 

What would you do?

 

We wait for what is called a specific gravity test on Jani’s urine. It comes back low, but not dangerously so. Jani will be released but we must follow up with her doctor the next day.

 

The next day her specific gravity is normal.

 

I try to go to work again. Again Jani gets diarrhea.

 

And finally I get it. She only gets it when I am gone. Even though I am only gone teaching nine hours a week. She needs me.

 

I still have four weeks to go. Every day I work now, I am afraid to go, afraid to leave her behind.

 

I thought we were getting better. I thought I might be able to work more. Now I am praying I can get through the last few weeks. We have returned to her needing me all the time. I can’t function again because I must be with her all the time.

 

This week there is no school tomorrow (Veteran’s Day) and a furlough day on Friday. Then Thanksgiving. Then the Christmas Break. The depths of winter.

 

My cell phone rings all the time. Creditors, mostly the holders of my student loans. I am sure I am in default by now. I can’t answer their calls. I can’t have a conversation because I am with Jani.

 

I go to two ranches and shovel manure, trading my labor for her horse therapy (because I can’t pay). I don’t mind this. I find it peaceful. I don’t have to think and I know Jani is okay without me for awhile.

 

I expect my student evaluations this semester to be terrible.

 

I will miss the deadline for my book. I have no time to write the damn thing.

 

We are late again on the rent. Usually the manager waits until the middle of the month before sending us to “legal,” but they did early this time. Right now they are having the parking lot of the apartment complex resealed, meaning that cars must be off the areas that were done until 6pm. Tonight, after picking up Jani from school, where all she could say when I kept asking what science experiment she had done was “I missed you.” We arrived home at 5:30. The parking lot was still blocked off, but I figured it was no big deal with only a half hour left. So I lifted the cordon and drove in.

 

Ten minutes later, I get a call from the irate manager, asking me why I think the rules don’t apply to me.

 

My first response was what was the big deal. It was almost six anyway. She tells me I could have damaged the parking lot if it hadn’t cured yet and if they have to do it again… I think she was about to threaten me with having to pay for the resealing until she remembered I haven’t paid rent on the one of the apartments yet. She went on to say, “You did it because you didn’t want to be inconvenienced!” like she was my mother reprimanding me. I felt myself starting to go. I felt the wave breaking over me. Yes, my life is all about convenience. I snapped and told her I have a schizophrenic child who needed her dinner and needed her meds and needed to go to bed and I couldn’t wait for her stupid parking lot.” “I get that,” she replied in her condescending “you owe us money, you loser” voice, but I cut her off. “No, you don’t get it! Nobody gets it!”

She threatened me again not to park tomorrow on the section being resealed. I said nothing. I hated her. I hated the power she had over us. Sometimes I get messages from well meaning people asking me why we don’t move, since paying for two apartments is so difficult.

 

If Jani gets diarrhea from the stress of me going to work for 9 HOURS A WEEK, how is she going to deal with the stress of moving? She is hanging on, fighting her psychosis as hard as she can, only because we work so hard to keep her life stable even though the rest of the world keeps trying to fuck with it.

 

After a long moment of me not responding, she coldly wished me goodnight and hung up.

 

I am being petty, I know. But with everything I have to deal with, to get on my case about driving on the parking lot thirty minutes before it was due to open anyway seems pretty damn petty too. I shouldn’t even be talking about this. It is nothing. Everyday I get emails or Facebook messages from other parents with mentally ill kids, looking for my help. And I do my best, while still struggling to keep Jani going. And they are always the same needs. They don’t need help with meds or understanding psychosis. They already know. What they need help with is dealing with “the system” that would rather send our children to residential that actually help them stay with their families.

 

I wouldn’t be surprised if an eviction notice shows up on Jani’;s apartment door tomorrow. We haven’t paid the rent. We can’t pay the rent. There is nothing left in the barrel to scrape. It is empty. They can throw us out. I could take them to court, I suppose, but what would I say to the judge: “I need two apartments to keep my son safe from my schizophrenic daughter and to keep her stable.”

 

Then why don’t you send her to residential? Maybe it will be a court order. I can’t possibly expect Riverstone Management to give us free or discounted rent on one apartment just because my daughter is sick, can I? I am not entitled to special treatment.

 

I don’t need it. She does.

 

But we are cutting that every where, aren’t we?

 

I want to scream in frustration. I am sick of the world. How can I help other families with mentally ill children when I can’t even help my own.

 

I feel like the wave is about to crash over my head and I am too damn tired to fight it anymore.

 

 

So what did happen that day?

 

The wave hit me. I remember swallowing water. I felt myself turning upside down. My head and back slammed into the sand. I struggled to get back to surface but found I couldn’t. At first I panicked, desperate to breathe. But then another moment of clarity came over me.

 

If this is it, so be it.

 

The wave’s undertow dragged me along the coral. I felt sharp stings as coral and sea urchins punctured me.

 

I let go. I let it all go.

 

Then I felt it release me and I floated gently to the surface, bloodied and gashed but alive.

 

I feel depressed tonight. I feel afraid for the future.  The wave is crashing over me and pushing me down and I cannot fight it. But I am not going to die. I may be battered and bloody, but I know it will let me go. It is the law of the wave. It must go out again, as surely as it came in.

 

If tonight you are out there, like me, with the wave pushing you down, just let go. Let it drag you along the bottom. It will hurt, but one day, I promise you it will let you go, because it has to. One day, you, me, we all will break the surface again and feel the sun on our faces.

 

[video:

100×100]