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:
Wendy K Warbasse
My H Doan Katherine Welch
Ainara Del Valle Perez-Solero
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.